Provocation for innovation 3: Frugal innovation – making good stuff happen with eff-all cash

On 14th of April 2016, Mark Brown (@markoneinfour) ran a mental health minihack at Marmalade, the fringe of the Skoll World Forum in Oxford.  In preparation he prepared three provocations to put to attendees for areas where it would be possible to innovate in mental health as actors coming from outside of the established publically funded system of mental health treatment and support.

Attendees were told to apply their knowledge and experience to addressing these presenting issues.

Below is the third of these provocations  ( (The first ‘Payment by Results – outcome measures – getting data – arranging payment’ can be found here and the second ‘In mental health communication is flakey’ can be found here)

Provocation 3: Frugal innovation – making good stuff happen with eff all cash

According the Mental Health Taskforce report published in February 2016:

  • People with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people

  • Nearly two million adults were in contact with specialist mental health and learning disability services at some point in 2014/15

  • Nine out of ten adults with mental health problems are supported in primary care.

  • Of those adults with more severe mental health problems 90 per cent are supported by community services. However, within these services there are very long waits for some of the key interventions

  • Mental health accounts for 23 per cent of NHS activity but NHS spending on secondary mental health services is equivalent to just half of this. Years of low prioritisation have led to Clinical Commissioning Groups (CCGs) underinvesting in mental health services

While many objected to the Conservative Big Society idea; it did represent one answer to the emerging crisis which, depending on your viewpoint, was either caused by or resulted from austerity.  At present there is little investment in mental health research and the available charitable funds for the actual provision of activity to support people with mental health difficulties has dwindled over time.  The crunch on local government funds has also reduced greatly the available funds for mental health.  Big Society suggested that frugal innovation might provide an answer to some of the unmet need in our communities.

Innovation has not been easy for organisations structured with business models developed in an era of public spending expansion.  It’s possible to argue that larger organisations lack the agility and the entrepreneurial skills to be able to develop, prototype and test new ideas. It’s also possible to argue that this is not entirely a bad thing if we are talking about maintaining the welfare of people who are having a variety of challenging experiences and who rely on a consistent and reliable service.  It’s more difficult to argue that the interests of a provider always align with the interests of a consumer when the consumer is a person with mental health difficulties who has funding allotted on their behalf by commissioners but is not a direct ‘consumer’ in the traditional sense.

The problem is that entry into the market is extremely difficult for smaller organisations who need to raise the funds to do before they can build they evidence that they can do.  The bootstrap paradox is strong in mental health.

In a marketplace where funds are dwindling while need is rising, there has been much discussion of ways in which people with mental health difficulties might find solutions to their own problems with little discussion about ways in which that might be made a reality.  As an area there has been much rhetoric but the reality has tended to be tiny amounts of funds mostly inaccessible to the kinds of small autonomous groups that form to solve particular problems.  Government backed initiatives like Community Organisers, the DWP’s Developing Disabled People’s User-Led Organisations Programme and empowerment style organisations such as NHS CItizen have failed to touch much in mental health.

While many have ideas about what might be solved; the question of how such people might be resourced, supported, funded, matched with resources and how they might find some kind of sustainability still remains.

Presenting Problems

What financial devices might support small groups to deliver high quality mental health related services?  How would investment in such groups be made possible, considering the considerable risk?

How might the knowledge gap around innovation, product development, design and management of human and other resources be bridged?  How might innovation activity be focused on unmet need?

How could larger organisation find ways of working with a wider range of people to meet unmet need without requiring large amounts of additional investment?

How can innovation be fostered in low investment; low return areas such as mental health?  How might we make mental health stuff happen when there is f*ck all money?

How might innovation serve the unmet needs of people with mental health difficulties rather than the provider interests of organisations? How might frugal innovation in mental health be supported?

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

 
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Provocation for innovation 2: In mental health communication is flakey

On 14th of April 2016, Mark Brown (@markoneinfour) ran a mental health minihack at Marmalade, the fringe of the Skoll World Forum in Oxford.  In preparation he prepared three provocations to put to attendees for areas where it would be possible to innovate in mental health as actors coming from outside of the established publically funded system of mental health treatment and support.

Attendees were told to apply their knowledge and experience to addressing these presenting issues.

Below is the second of these provocations ( (The first ‘Payment by Results – outcome measures – getting data – arranging payment’ can be found here and the third ‘ Provocation for innovation 3: Frugal innovation – making good stuff happen with eff-all cash’ can be found here)

Provocation 2: Communication is flakey

The NHS is the prime provider of mental health services in the UK.  The target of a paperless NHS has remained an ever-postponed target.  The latest target for this is 2018.  Even if the NHS does go paperless internally; it still has a preference for letters and faxes.

From a user perspective, the hierarchy of communication is often

  1. Letter

  2. Phonecall

  3. Follow up phonecall

  4. Maybe another letter

Large mental health providers are still at the stage of central switchboards and extension numbers.  People in offices take messages for colleagues who are not there.  A patient must, for example, know exactly what service any professional they are trying to communicate with falls under and the their exact name.

The NHS mental health workflow has not been updated to include instant or asynchronous electronic messaging.  Internally, the ‘ring round’ is often the way in which tasks are achieved ‘in real time’ (the traditional ring round to find a bed); with email functioning more as an analogue of letters and memos rather than as a form of instant communication.  There is still a lot of ringing to check to get things done.

Electronic communication is considered differently by different trusts and organisations.  Some consider it risky; especially if it involves text messaging via mobile service.  Others are concerned by the privacy aspect communication that is non-paper or isn’t face to face.

Patients, clients and service users are still at the mercy of letters, photocopied letters and telephone calls which present obvious challenges for those without secure housing; those with communication difficulties and those for whom their mental health gets in the way of doing things like opening letters or taking unexpected phone calls.

Internally, patient records and patient notes are still in many ways analogue.  They are often physical files with accompanying digital notes.  Record keeping can be unwieldy; subject to differing levels of diligence by staff and often creates something that is not translatable fully into data.

While patient accessible electronic records are always ‘on the horizon’; in practice it often isn’t clear what the use case for these will be.  There are a number of projects working upon the idea of patients being able to amend or add to existing records.

At present much of the communications traffic from service provider to service user is one way.  The organisation tells or informs; the patient or service user acts.

In situations where support is provided by telephone such as Crisis Home Treatment teams, only 14% of people feel they receive the support they need according to 2016’s Mental Health Taskforce Report.

A number of organisations have developed apps and similar to help colleagues communicate with each other.  One NHS Trust has developed an app that allows any member of staff to locate another member of staff while they are on the hospital estate; and a similar app so that clinicians can locate patients when they have been moved around the estate, for example when they are being prepped for surgery.  In many hospitals there is one telephone per ward.

Presenting problems

How might mental health service providers better communicate with those they serve?

How might service users or patients collaborate on a meaningful health record, if a health record is what the collaboration should be?

How might different mediums of communication be used within mental health services to increase efficiency and patient or user satisfaction?

How could information and communication be used to match resources with need better?

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.
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Provocation for innovation 1: Payment by Results – outcome measures – getting data – arranging payment

On 14th of April 2016, Mark Brown (@markoneinfour) ran a mental health minihack at Marmalade, the fringe of the Skoll World Forum in Oxford.  In preparation he prepared three provocations to put to attendees for areas where it would be possible to innovate in mental health as actors coming from outside of the established publically funded system of mental health treatment and support.

Attendees were told to apply their knowledge and experience to addressing these presenting issues.

Below is the first of these provocations. (The second  ‘In mental health communication is flakey’ can be found here, and the third ‘ Provocation for innovation 3: Frugal innovation – making good stuff happen with eff-all cash’ can be found here)

Provocation 1: Payment by Results – outcome measures – getting data – arranging payment

Roughly speaking, the three areas where it is possible to help people with mental health difficulties to live lives where they can do what they want and need to do centre on

  • Treatment

  • Care

  • Enablement (either augmentation of the individual or alteration to the conditions of their life, surroundings or the workings of the society in which they live)

Helping and supporting people with mental health difficulty is an area where it can sometimes be difficult to assess impact.  Unlike other areas of health, it can be more difficult to see the relationship between activity and outcome.  In surgery it is possible to look at operations carried out versus recovery rates.  In mental health ‘recovery’ is a more challenging idea and one that is more difficult to measure.

The effectiveness of interventions or services in mental health is often judged either by a proxy measure, which are often imperfect, or by self submitted information about the effect the intervention has had.

What people such as charitable funders, governments and investors are prepared to pay for is what it is possible to measure.  To measure things that happen inside people’s heads and in their lives is often considered to be difficult.

Public services, including the provision of mental health support or treatment, are increasingly moving toward a Payment by Results model.  This has led to concerns both from professionals and from people with mental health difficulties who may or may not use services.

The concerns include:

  • Collection of data is difficult, time consuming or challenging for providers

  • Collection of data involves prying further into the personal lives of people using a service than those people are comfortable

  • Data is not robust and does not really reflect results

  • Data does not give a clear enough picture of what is happening to make changes in the way that a service is delivered or in the way in which it is paid for

There are also concerns that any process of measuring impact will transform the service into something that measures its clients progress against the required or intended impacts rather than measuring the ability of the organisation to deliver the results intended.  In mental health, tools such as the Recovery Star have shifted from measuring activity to being an activity in themselves where the measurement tool becomes a goal setting tool instead.  The tools intended to measure impact of services are often used to measure the progress of individuals.

Mental health is also struggling to work out methods of paying for individual activities or services.  Personalised services, while in theory possible, are often tied up mires about contracting, managing and payment.  Personal health budgets or personal care budgets are intended to make it possible for eligible people to commission or contract support or care that they choose but currently have a high level of bureaucracy involved.  There is, at present, no strong methods of managing the contracting, payment and funding of small blocks of personalised care and support.

At present the NHS takes the majority of all government spending on mental health.  Charitable funding is not to the level of other areas of health, despite mental health difficulty being a significant area of expenditure.  At present investors find it difficult to know what they would be investing in were they to invest in mental health .

Presenting problems

How might impact be measured in mental health in a way that will drive both delivery and efficiency?

How might a payment by results model be developed that actually fits mental health?

How might mechanisms be developed to enable more efficient use of personal budgets?

How might investors structure investment in mental health in a way that does not short change people with mental health difficulties and how might investees evidence impact of that investment?

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

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Just what *is* the role of digital tech in health and social care? #EHWK16

The following is the text of a talk  “Why Digital Technology Might be our Best Ally Rather than our Worst Enemy” given at London’s Olympia by Mark Brown as part of UK e-health week 2016.

Today I’ve been given the job of talking to you about why digital technology might not be our worst enemy in health and care and why it might, in fact, be our best ally.

What I want to do is make the case for certain ways of approaching e-health technology by first looking at reasons why it can be difficult to engage with the idea of digital tech; then looking at some of the things digital tech might do in health and care then finishing off with some ideas about what you might do to help a good e-health future happen rather than an awful one.

Generally speaking, the promise of e-health is that it can make things happen in different ways.  In my view, we’ve reached, at least for the time being, the end of the era of big breakthroughs in health.  A lot of people need things they currently aren’t getting.  We’re stuck with the treatments we have, many of the structures we have.   I think the area where our advances will be made, at least in the short term, are in the sweating of what we do have; continuing to explore new ways of making a bigger impact.

In social care and in health care, the single most valuable resource is people.  If we get tech in health and care right it could free up more staff time to do the really important things that only humans can do.  Tech needs to make things easier and better in ways that work for people.  For example, digital technology might be able to reduce the burden of paperwork meaning we could spend more time with people.

So, why do people worry about tech?  Why does it look sometimes like more of an enemy than a friend?

Best case scenario / worst case scenario

It will not have escaped your attention that the NHS in England is going through what, to the mind of some commentators, is its longest ever time of crisis.

The picture in social care is similar.  Local authority budgets are being squeezed until their pips squeak.  The money that was there to pay for things isn’t there anymore.

The first flickerings of austerity began during the global financial crisis in 2008.  As banks collapsed and debt became toxic; money just evaporated from the economy.  It became clear that public spending wasn’t going to be able to expand indefinitely as it had for much of the previous decade.

Whatever your view, the story is the same: there’s less money in the kitty than we’d like and any of us who work in health or social care have to find ways of being more efficient.

At the same time, something incredible was happening.  While the global economy went into meltdown and the UK government desperately attempted to avoid us going bust; almost without many of us noticing, the boundaries of what was possible with digital technology began to widen.

The iPhone was released on June 29, 2007 in the United States.  The first commercially available smartphone running Android was released at the end of  2008 in the US.  The first iPad was released on April 3, 2010, with Android and Windows tablets following soon after.

Digital technology was becoming mobile and, as importantly, it was plummeting in price.

At the same time that it was looking like we were going to hell in a handcart with socks darned so much they were all thread and no wool; a brave new digital future was unfolding.  While people are cuing for the food banks we’re uploading selfies like there’s no tomorrow. The credit crunch was happening at the same time as we all started to fall for Candy Crush.  What if, the question seemed to be, this digital thing might be the answer to our public service problems?

And there we hit our first snag.  At the same time as trusts and local authorities were preemptively trying to slash their budgets (2008-2010) and then government were reorganising and cutting (or not cutting depending on your political viewpoint), this flower of digital possibility was blooming.  For many, the idea of efficiency savings, of working smarter, of pushing for better outcomes, of doing more for less become a codeword for cuts, erosion of duties, unmet need and greater job insecurity.   The choice looked like either maintaining everything that we had before, health capacity being about warm human bodies or about embracing the digital future and having empty rooms filled with bleeping screens.  Digital transformation looked like a code word for ‘loss of jobs’.  People still ask: why are you farting on with technology and spending all that money instead of employing more nurses or other frontline staff?

‘Unleashing the power of e-health’ runs right into this. The easiest way to avoid the implications of tech is to do everything you can to avoid using it.  There’s sometimes an idea, one at times unfortunately propagated by telehealth providers, that technology will allow you to ‘do away’ with staff teams.  Andrew McAfee Co-author of The Second Machine Age refers to this as digital encroachment, the direct replacement of human labour with machine labour.

Four challenges

For almost as long as the NHS has existed we’ve all watched digital technologies make other people’s jobs obsolete.  Remember typing pools?  Or indeed bookshops?

I think there’s four challenges in embracing digital in health.  Our first challenge in thinking about digital technology as an ally is that we fear it might take away our job.  It’s a myth that all human endeavours are equally likely to be completely disrupted by digital encroachment.  Some things will always need direct human labour. Health care is one of those things.  Nursing especially.  Nursing and midwifery are primarily at their heart about doing things with people and the construction of systems, processes and knowledge to enable that to happen in the best possible way.

There’s a second challenge in the sense in which, for some people, the use of digital technology in healthcare feels antithetical to NHS values.  This is especially true if you see the job of the NHS is to care for people not in an abstract sense but in a real skin to skin, face-to-face sense.  It can feel as if the potential of technology to remove the human work from a lot of tasks makes people very scared that this will be pushed to a limit, as if the strongest voice is the one pushing for no humans at all.

The truth is that some patients want far more contact with lovely NHS staff and some want far, far less.  People tend to have a preference for the level of face-to-face care that’s comfortable for them.  There are times when I absolutely would love to talk to someone about my healthcare but I have no reason to make an appointment and other times where I have to go to the doctor for a routine procedure when I’d much rather be somewhere else.  Digital might provide a way of getting that balance right for more people.

Our third challenge in thinking and dealing with the idea of new technology is that it makes us feel out of our depth. It challenges us by making our workplace practice unfamiliar.

We have spent years training to be what we are.  We’ve spent time and money and blood and sweat and tears building our professional toolkit; turning ourselves into useful tools.  Our job is what we spend most of our time doing.  We worry about having that professional competency undermined or taken away from us.

New technology feels like magic, something arcane, something only controlled by other people, not us.  It feel like something built by people very different to us.   Science fiction writer Arthur C. Clarke, writer of 2001 amongst other things, back in 1963 wrote  “Any sufficiently advanced technology is indistinguishable from magic.”

Our fourth challenge is that we are scared that we don’t understand tech or that we’ll be helpless if it breaks.

This can be disconcerting if you grew up, as I did, in the age before apps and smart phones and ipads. Then computers were something you had to learn; like learning a new language.  The computer was like a foreign exchange student that sat in the corner, not understanding most of what was being said and only leaping into action when exactly the right command was issued in exactly the right language for it to understand.

To be fair these fears are not unfounded.  A lot of the technology rolled out by the NHS internally has been a bit rubbish.  When that happens we fall back upon the ways we have ‘always’ done things.    Internally in the NHS and in the wider world of social care, the ‘ring round’ is often the way in which tasks are achieved ‘in real time’ (the traditional ring round to find a bed); with email functioning more as an analogue of letters and memos rather than as a form of instant communication.  There is still a lot of ringing to check to get things done.  Many wards only have one phone.  There are still NHS sites where there isn’t wifi.  When record keeping software isn’t very good we end up keeping hand written notes and ‘typing them up later’.

The problem of bad tech is that it makes the thing it was intended to replace look even more correct. That’s because it doesn’t solve the problems we have in a way that suits us.  It’s easier to remember the times that a ‘new thing’ didn’t get the result we wanted to happen than to think back on the inefficiencies of ‘the way it has always been done’.

What we think about when we think about tech

It can be difficult to get into tech from a standing start.  It feels like there are far too many things to learn about and far too many different things to try.  The best thing to do is to start by thinking about what digital tech can do in health.

At the beginning of 2016, independent health charity thinktank The King’s Fund published an article listing eight digital technologies that they feel will revolutionise health and care.

The authors Cosima Gretton and Matthew Honeyman divided the article between technologies that are “on the horizon” and those “already in our pockets, our local surgeries and hospitals.”

Number one on their list was The Smartphone.  Gretton and Honeyman claim that in 2015 two-thirds of Britons used them to access the internet.  The smartphone is ultimately a tiny powerful computer that is very, very good at sending and receiving data and interfacing with other things.   It also makes and receives phonecalls.  In the main, though, the smartphone is an amazing thing for health because, unlike just about every other health intervention, people love their phones, value them, look after them and carry them around with them at all times without being asked.

Other entries on their list included:

Something they call ‘At-home portable diagnostics’, the use of particular bits of kit either on their own or in conjunction with other devices like smartphones to provide diagnostics, readings or measurements and that help professionals and patients to interpret the results.  A familiar example of this will be things like blood glucose monitors for diabetes.

The authors also included smart assistive technologies in this category.  Lots of people use devices and apps to help them to do things they want or need to do.  With addition of sensors and ways of communicating the data they produce; these things – from adapted cutlery to walking sticks can track how they’re used over time – hopefully feed back lots of useful information about how, when and where they’re used.  It’s not always clear whether people will want their walking stick grassing them up to their medical professional for not going for a walk or their inhaler telling their doctor when they’ve had a cheeky fag.

Also on the King’s Fund list were digital therapeutics.  These are health or social care interventions delivered wholly or mostly on computers, tablets or smartphones.  Mental health, my own area, is rife with these interventions.  Everyone is trying to crack the model for delivering evidence based psychological therapies at scale using digital devices.  To my mind no one has quite managed it yet.  Probably of more interest is the use of such apps or services to support people in the management of long term conditions, where a combination of health positive activity needs to be sustained over time and to be reviewed.

They also included machine learning.  If you’ve ever used the google search engine you’ll have noticed that over the last few years it’s gotten better at guessing what it is that you’re searching for or what you’re asking it to do.  This is because google is learning from the inputs of people who use it.  Machine learning is about programs that are set-up to process data and to find things in that data they haven’t been specifically asked to discover.  Machine learning means that programs used to recognise things can begin to spot new patterns not obvious to human observers or to make suggestions about new things that it is shown based on previous things it has seen.  The implication is that if we have programs that look at data for patterns we’ll end up with programs that can make guesses when exposed to new data.  There are thoughts that this might be useful for diagnostic decisions or for analysing lots of health data.

The King’s Fund were also keen on connected communities as a big health and care impact.  Given that social media and apps and services with social functions can now bring us together; Gretton and Honeyman suggest that this might be something that’s harnessed to support or create patient communities; enable peer to peer knowledge and support and to generally help stitch us together into a mutually supportive fabric that can take some of the weight of keeping as well as possible.Patients supporting patients; peers supporting peers; patients supporting professionals and so on.

If we combine Gretton and Honeyman’s list you get a glimpse of the potential for digital technology to fill in many of spaces where health and social care finds it difficult to reach, especially focusing on the bits of people’s lives which don’t take place in hospital or the consulting room.

These however are what you might call technologies.  The world is full of technologies that no one knows what to do with.  The key is to find the application of a technology that works for people and solves a problem that they have.  We had touch screens for decades before apple arrived with the iphone and made us realise that they were really useful for things that we could hold in our hands.

Similarly, there’s lots of things that are possible it’s about working out what’s desirable.

Roughly speaking,  digital tech can do the following things in health and care

Automation – basically digital can use machine power to do things that would be routine but would take person time.  For example, an app could check blood test results and only bring them to attention if they are abnormal.  Similarly, an app might dispense treatment advice or a device paired with an app might monitor a condition.  If it’s boring, repetitive, involves the same thing over and over you can bet it’s possible to automate it. Repetitive and rote tasks are where we’re most likely to make mistakes.

Build better Interfaces – there are lots of sources of data and information in the world. Digital can make better ways of getting that information and sharing that information.  Electronic patient records are an example.  Another might be a way of displaying patient information in such a way as to minimise clinical mistakes.  Digital technology is all about how people interact with things.  Touch screens make things possible for people that were complex or impossible before.  If there’s more than two things that need to interact with each other somehow, digital tech can probably make it happen better.

Communication – digital technology makes messages follow people, makes it possible to speak to multiple people in real time, makes it possible to make contact with thousands of people at once.  Everything from social media to text messages to voice-to-text to text-to-voice to handwriting recognition: there’ll be a digital way of getting the message across differently.

Data – digital technology makes it possible for something to collect data as it does the thing it was intended to do.  A toilet might tell you via sensors how many times it has been used in twenty four hours, a bed might tell you how many times the patient has turned in twenty four hours.  If something is happening; digital tech will probably help you find a way to measure it and give you results in a form you can use.

You’ll hear many of these ideas applied over the course of today’s presentations.

I liked very much University College London Hospital’s app ‘Find my Patient’.   It’s an iOS app that “ is able to securely display a variety of imaging and pathology results, as well as locating the patient’s bed within the hospital. Hospital patients sometimes need to be moved to a different ward or area due to clinical requirements or for practical reasons. The FindMyPatient app means that doctors no longer need to locate patients using printed information from hospital terminals or by calling wards to find where their patients have been moved to.”

That feels to me like a neat little solution to an actual problem that people really have.  If you can use digital to solve a problem people actually recognise in a way that works for them they’ll love you for it.

How can health and care get comfortable with the idea of tech?

The NHS is one of the most complex experiments in human healthcare ever undertaken.  There are few who understand it in its entirety and it’s often baffling to even people who work within it.  Social care continues to become more complex by the day. Often e-health solutions are instigated to solve system problems and it’s up to people ‘on the shop floor’ to make them work.  I’d like to see it work the other way, with digital technology being used to solve shop floor problems.  And that’s where you come in.

One of the first ways we can get comfortable with tech in healthcare is to just be interested.  The world is full of amazing tech things.  There’s more processing power in your pocket or bag then there was to put a person on the moon.  The best way to get a feeling for tech is to just play with it.  Instead of saying: this isn’t for me; even reading just the tech stories in the newspaper will start to bring the possibilities of digital technology alive.

The second thing is keep your eyes open for problems to be solved.  In some ways; I think the most powerful partnership for influencing what technology in health and social care can be is between the frontline and patients or clients.

One of the really cool things about medical and social care people is that you tend to be problem solvers; but you don’t need to be able to make an app or a website yourself to come up with a really good problem that someone should solve. People who build tech are engineers. Engineers like solving problems.  Health and care professionals know about health and care.  People know about their lives and how they feel about them. The mix of those three things makes good digital things happen.

Looking toward digital in health doesn’t need to be about massive transformation; it just has be about solving a particular problem and solving it well.  If we spend our time with people, people we care about, we will see problems without solutions all of the time.  E-health doesn’t have to be massive. It gives us a chance to build things that might initially change the lives and health of a few people, then a few more.  And then more.

Think about your daily practice: what things really get on your nerves? What things never work very well?  What things do patients complain about most?  Think about what things do most to take you away from the bit of your job that patients most value.  The chances are you’ll be able to turn that into a question for which e-health might have an answer.

The formula I would use for thinking about digital technology and innovation is:

Knowing what kinds of cool stuff technology can do + thinking about small, well defined problems = ideas for possible digital solutions.

Sometimes the answer is a new thing.  Sometimes the answer is an old thing in a new way or at a new time or in a new place. Sometimes the answer turns out not to be digital at all.

Not paying attention to digital technology doesn’t mean it won’t happen in health and care.  It just means that the digital technology in health and care will be bought and built by people who understand the people sized problems of health and care less than we do.  Digital technology is not a possible future, it’s an unfolding present.  Digital is already changing things.  A change you choose is much less painful than a change forced upon you.  We have the opportunity to make the best of digital technology so that we can make the best use of ourselves, our skills and resources.  That’s why need to stay at the table, get our head around the possibilities and the things people need and influence what happens.

Out there, amongst the stands and the speeches and the presentations and the celebratory editorials, it’s like Gods speaking to each other over the heads of us mere mortals. Big companies talking to big bosses.  Technology will wing its way in, solve all the problems, be seamless they promise.  The debate is like first world war generals discussing a map of the Somme while the rest of us are shivering in the mud of the Somme, ducking bullets and trying not to die.

Roughly speaking, tech people tend to get really excited about the application of something while the rest of us get worried about the implication of it.  Or to put it another way, tech people ask ‘could we do it?’ while the rest of us ask ‘should we do it?’

At the moment; it’d be easier for google or apple or Microsoft to open a hospital than for the NHS to get fully up to speed with the possibilities of technology.  I don’t want google or apple to be running my healthcare if it means the NHS won’t be here.

If we don’t stay interested, if we hide from digital, somewhere in the NHS or a local authority, miles away from the frontline, someone will come along and commission the wrong digital things for the wrong reason, doing the wrong things in the wrong way. Probably for the wrong people.

If you want to get started, get out there today and talk to people.  Ask them to explain to you exactly what problem their shiny new tech solves.  Ask them ‘if your technology is going to be my ally, what’s in it for me; my colleagues; my patients, my NHS, my social care?’

We have a chance to make digital something that makes healthcare better.  Technology isn’t the opposite of healthcare; it’s a way for health and care to get better.

We’re making the future of the NHS and the future of social care right now and I want to make sure we do them proud.

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

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Just what is the point of health professionals in social media? #wgt16

The following is the text of a talk given by Mark Brown at We Get Together 2016 at Salford University on 29th February 2016

I want to share a speech that I first made at NHS Expo in 2014 about social media and public professionals, sharing a stage with our very own Teresa Chinn and Victoria Betton. (The full text of the original speech can be read here.) It was written in an attempt to define and to stake out a role for health professionals in social media in a period where they were running the risk of being shut down and hemmed in overly rigid corporate cultures.  Once I’ve done that I want to bring us up to date a bit with where I think we are now.

At a time when the NHS is experiencing its biggest challenges for at least a generation, I want to talk to you about the way in which social media can help to root the NHS in the fabric of communities. I want to talk to you about the ways that social media creates an opportunity for a whole new generation of ‘public professionals’, professionals doing their jobs while maintaining social media enabled relationships with a whole range of people..

But first I want to take you on a little journey…

It’s Sunday evening. The house is filled with the smell of ironing and leftovers and the sound of grumbling kids and grumbling adults all counting down the hours to Monday morning.  You and the family settle down to watch something comforting and gentle on the television.

It’ll be set in some time between about 1920 and about 1963-ish.  If it isn’t set then it’ll be set in a rural community somewhere as if it were 1920 to 1963-ish.  It’ll feature an affable public servant. It might be a police officer.  Or a doctor.  Or a midwife.  Or a district nurse. Or a coastguard.  They’ll spend each episode doing their job but also being involved in a whole variety of shenanigans.  The message will be they are a valued part of this particular, peculiar community of people.  Occasionally they’ll come to blows with someone from The Ministry or similar, someone who represents the far-distant bureaucracy ‘who don’t understand our local ways’.

What these Sunday night comforts all share is the nostalgic appeal of a world where public services were explicable, knowable and human sized.  It’s the fantasy of the local GP having a few pints in the snug of the local pub or the beat bobby who slurps tea in the local cafe.  It’s a yearning for the days when public services felt like they grew from communities, rather than being distant, complex structures that lurk at the edges of everyday life. It’s the wish to feel like there’s someone who is part of our world that can also help to understand the world of public services.

Social media is in some ways the latest village square or local cafe.  It’s a place where people check in to hear the latest news, catch up with friends, debate, flirt, ferment revolution and/or swap dirty jokes.  In short, it’s a place where people do people stuff.  Social media is where people are.

It’s very easy to underestimate how much of how the NHS works is opaque to the public. It’s like a big castle with high walls.   It’s very easy to underestimate how much of how the NHS works and what the NHS does is opaque to the people actually working for the NHS.

There’s a difference between giving health advice and discussing health issues, just as there is a vast difference between individual treatments and the service which delivers them. The NHS isn’t staffed by robots.  In fact we’re so scared that the NHS might be losing its human touch that we’re talking about training people in compassion and empathy.

So, what’s this got to do with public professionals and social media?

Public professionals talk about their job via social media.  They combine two things: they appear in the public realm talking about their job in way that used to only be possible if a journalist thought you interesting enough to interview. They talk about the pleasures, they talk about the joys, they talk about the difficulties, they talk about the issues that arise from doing it.  They put a human face and a human voice to what otherwise might seem a semi-robotic function.  They help the public to understand the process, the practice and the limitations of healthcare.

Public professionals inform the public of their practice and in turn have their practice informed by the public.  This is the second thing public professionals do: Public professionals talk to each other, they talk to non-professionals, they carry information into areas where it isn’t usually found.  Using social media they get ‘out and about’. Public professionals learn from the blogs, tweets, videos and discussions that they find themselves in and carry this understanding back into their work.  It’s easy to forget just how much taxpayer funded knowledge and wisdom is currently sitting within the staff of the NHS.  It’s awesome but it also ends up hidden from the people who paid for it.  Public professionals jailbreak that knowledge and carry it out into the community via social media.

In social media, information doesn’t just flow outward from providers, it’s a two-way traffic.  People increasingly expect that organisations will speak back to them and listen to them.

It’s hilarious to me that the NHS has a challenge with engagement and involvement.  Public professionals mix with people via social media (and often in real life too): they’re the person you talk to who is also a nurse, or a the person whose blog you read who is also a doctor.  Public professionals are engagers and connectors by nature.  You can’t do social media well without connecting with people.  For people like me, who aren’t in the NHS, public professionals are a point of entry, a way into understanding it better and a guide to navigating the complicated flows of information, misinformation, spin and rumour.

If we trust people to make life or death decisions over others we can trust them to have opinions.  If we’re battling for hearts and minds, which I think we are with the NHS, then public professionals are the best ambassadors there are.

Public professionals are a two-way conduit.  They take information out of its NHS castle and while they’re outside, in the bustling town square of social media they learn, and talk, and listen and they take information back into the castle, too.

And, being part of a social media communities and relationships means public professionals stick around through the good times and the bad times because they’re a person relating to other people.  You can’t be all ‘share our good messages, retweet our opportunities, big us up’ and then lock down your twitter account when a scandal breaks.

Doing social media isn’t a separate job from doing a ‘proper job’. Public professionals fit in blogging, podcasting, tweeting around the rest of their work.  You don’t need to be a social media expert to do social media. You just need to know your subject and just need to be really, really passionate about discussing it.

The rules for being a public professional via social media are really the rules for any healthcare professional: Listen, speak with respect and care, know your subject, don’t talk about the benefits of your work without discussing its limitations, don’t think you know everything, be proud of your job but not blind to its failings and be an advocate for the best of possible worlds by understanding where things are worst.

I’ll just leave you with this:

While social media isn’t the be all and end all of things: The public sector sometimes only gets the urge to engage with people when it wants something.  How do you expect to engage the community, care for the community and be supported by the community if you’re not part of the community? That’s what public professionals do. And that’s why I love ‘em.

So, all you public professionals around the room, bask in the glow of my praise.  That was me making the case for your existence.

Now, more specifically, I want to talk about now.  And what you can do about now.

The three spectres: Cynicism, ignorance and minding your own business

In our national debate about what healthcare is, what it costs and where it should be in future years there are three great spectres haunting the land.

The first terrible ghost is cynicism.  There’s a lot of people who feel disenchanted and disenfranchised.  Patients.  Professionals.  Observers.  Despite stated intentions that healthcare would never again become a political football; we’re living through a period where there is an ever increasing sense of panic, of imminent collapse, a feeling of siege and of mounting horror.  People are losing their trust in public institutions.  Everyone in power is suspect.  Everyone seeking power is suspect.  Everyone questioning power is suspect.  In a social media age; everyone who wants to be is barraged by waves of spin and counter spin. Far from focusing people on what really matters it makes people feel so far from being able to change what really matters that they begin to believe that nothing will ever change.

Good things; things that people on the inside of healthcare believe in; work hard for and which really make a difference become drowned in a sea of political announcements and press releases.  People begin to lose their faith in you; in healthcare professionals and in the possibility of things ever being better.  It’s people like you in this room; people who work in healthcare who really care, who can help to change that.  Not by being relentless cheer leaders or by arguing with every critic and rebutting every accusation of self interest and ‘wasting taxpayers money’, but by being people online.  By showing that far from a distant professional class; you’re people doing vital jobs in difficult circumstances with diligence; thoughtfulness and humour.  The healthcare that we have rests upon the belief of the public in the reasons for its existence.  It’s you, out there in social media, thinking and learning and talking and promoting in public that are one of the strongest weapons we have.

The second spectre chilling the bones and turning all around it sour is ignorance.  Healthcare is complicated.  Healthcare systems even more so.  If we don’t work in healthcare we will usually count ourselves as lucky that we don’t know how it works.  Most people only have a passing knowledge of what the real engines of health care look like.  This is perhaps as it should be.  We don’t , after all, all need to be trainspotters to get on a train.  We just want to trust that the healthcare we need will always be there for us.

When the money starts to falter, though, the public is asked to make choices about what is and isn’t important.  What should and shouldn’t be funded.  Who should and shouldn’t take priority.  Even those of us who a deeply dug into the business of healthcare often shrug, crumple our faces and say ‘well, it’s, err,  complicated’.

The public is regularly asked to make or to accept decisions regarding health care policy that they have no way of fully understanding.  You all understand that how we do healthcare is as important as the individual treatments from which that healthcare is constructed.  In the vacuum; tabloid newspapers get to set health policy and public debate becomes a battle between bullshits.  You all, as health care professionals or healthcare professionals to be, have the power via social media to bring truth; to add light and shade; to explain; and to help give context and human faces to what might otherwise look like dry debates held by grey and faceless people in offices or thundering headlines above lurid scare stories.  You are the people who can bring debate back to what really matters: how do we help everyone to have the longest time in life with the least suffering and pain.

Every time you talk about the realities of your job and the questions it throws up; every time you share with others the best ways to get the best outcomes; every time you tweet, blog or facebook as a professional that cares enough to add to people’s understanding of how things work and how things are; you are helping others to understand and to see what really is important.

When political pressure to do one thing or another intensifies, you can be a professional who brings real knowledge and value to public debate rather than being a corporate robot or a political flagwaver more in love with winning an argument than making sure people don’t suffer.

The third and final spectre wrapping its ghostly arms around us is austerity and minding your own business.  When there isn’t enough to go around; everyone turns to their own plate.  At just the time when we need to be finding new answers to wicked problems, there will be many who want to concentrate on the frontline.  On keeping their head down.  On avoiding anything that might distract from the job at hand.  ‘Just do your job,’ they’ll say, “and everyone else will do theirs.’  The problem is that this is exactly what people do while things around them are falling to bits.  They bunker down; focus; stop looking around them.  The visible horizon shrinks and life becomes a series of tasks one after another after another until it’s time to go home.

At a time where it’s becoming clear that more of healthcare is about what happens outside of the hospital on the hill, social media is giving us a unique way of building new relationships; finding new things out and connecting with both professional peers and with people on the other side of healthcare.  At the time when we need to be helping people, including ourselves, make sense of the healthcare challenges ahead of us; too often we will be silent, inaccessible, absent.  We’ll withdraw into our professional shells at just the time when we need to be reaching out to each other and to the world at large.  We’ll let connections wither rather than tending to them.  We’ll become the very thing that others accuse of us of being: inward facing; set in our ways; aloof and out of touch.  At the point where we need to be making the case for the best possible healthcare and putting our heads together to see how it might happen we’ll instead isolate ourselves further as things crash down around our ears.

What is to be done?

If you are a social media user you have access to things that your non social media using peers and the generations who came before us do not.  Geography, time and space no longer limit who you can meet and converse with.  You aren’t limited by what books are in the library or which reports are on the shelf.  You have a freedom of movement and association that allows you the chance to be in many places at once; in many conversations; with many people you’d never have met in real life.  You can jump barriers and ignore boundaries.  You never have to be alone with your ideas and your concerns and your ideas.

You can be the people who bridge the gaps; the people who know how patients feel; the people who can see what effect the changes of policy and practice have on wider public opinions and sentiments as well as within your profession and within the systems they sit inside.

You can make things happen in ways that were impossible before.  Social media makes relationships possible that would never have even begun prior to its existence.

In social media you can build the trust we need to make sure that good things can happen.

So, that leaves me with one final question, as public professionals just what is it we going to make happen?

In social media, through things like we nurses and the things that will come after it, we have the possibility of building what has always been more theoretical than actual: a living, breathing community of people, both professional and not, committed to making whatever healthcare system we have the best it can be.

Social media can’t solve anything on it’s own.  But when it brings us together and when it makes the usually invisible visible, we might just be in with a fighting chance.

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

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Reflections on a shadow minister for mental health

Mark Brown reflects upon what the advent of a (Shadow) Minister for Mental Health means for mental health debate in England.

On Sunday 7th of February 2016 I was lucky enough to be present at Changing Minds, a weekend long mental health themed festival at London’s Southbank Centre.

The final keynote was an interview with Labour MP Luciana Berger, the first ever Shadow Minister for Mental Health.  In front of an audience in the Clore Ballroom she what she felt the greatest issues were in tackling the current challenges in the lives of people with mental health difficulties and what she viewed her role to be in the process of Labour policy development.  In the discussion of her role, Berger stressed strongly that her brief did not end at improving the provision and funding of NHS mental health services.  She said that she saw it as vital to add a mental health dimension to discussion arounds other areas of policy, listing her work with colleagues on policy formulation around areas such as housing and education.  I asked from the audience what she felt was the biggest uphill struggle in her brief so far or in the future. Her answer was “all of it.”  She was keen to stress that the audience should remember that she represents the party in opposition.

In the weeks after Luciana Berger’s appointment to the Shadow Cabinet I was asked to give comment by Disability Now on what her appointment meant for mental health more generally.  The comment I originally gave was much longer.  What interested me was that my thoughts at the time of the value of a minister for mental health, shadow or otherwise, almost directly reflected the position that Berger herself expressed to the audience at the Southbank Centre.

Looking out my original comments, it was interesting to see how closely her chosen understanding of the role mirrored my own musing.  As my full comments said:

“It’s a victory for the raised profile of mental health that there is political capital to be gained by addressing it. There’s something strong to be said for a minister (or in Luciana Berger’s case Shadow Minister) for mental health. Mental health is potential an issue that runs through all other areas of public policy, rather than being a particular piece of government. At a time where it is neccessary to find traction for the consideration of the mental health or illhealth of people as it interacts with public policy; a cross cutting role makes sense.

“It’s worth noting that Scotland has taken a different approach to mental health to the national government, with a stronger in principle focus on mental health across policy rather than just within health or social care.

“Even a shadow minister for mental health can help to bring texture and context to policy debates about mental health which, without an anchor in the real world of people’s lives tend to fly off into rhetoric and abstraction.

“In many ways it should be the role of a shadow minister for mental health not just to turn up when mental health services are being discussed; but to turn up to everything else and bring an understanding of the ways in which a given policy area impacts upon the mental health of the country and the lives of those with mental health difficulty within it. This means asking not just the question ‘how do we make mental health services better?’ but also ‘how do we make a society that supports those with mental health difficulties well and which creates the conditions for positive mental health, regardless of the policy area?’ An analogy for this might be Environment Minister rather than Care Services minister, a minister responsible for holding other ministries to account for their effect, positive or negative, on a particular cross cutting issue.

“To actually begin to take on the question of the ways in which a society better protects its mental health and the health of those that experience mental health difficulties is in some respects a politically unpalatable one because it doesn’t just suggest making better mental health services but also suggests acting upon the social determinants of mental ill-health and on the establishment of strong protections for those who have need of support, treatment or care.

“At present all political parties are dancing around the issue and finding it difficult to give voice to the idea that what we currently have is inadequate, outdated and often greatly out of line with the wishes, needs, aspirations and desires of people who experience mental health difficulty. Austerity is not good news for people’s mental health and tends to cut most harshly against those in most need. People with mental health difficulties often find themselves at the harsh end of of both public policy and market forces, tending to earn less over a lifetime, tending to be more reliant on social security protections and taxation funded support. People with mental health difficulties tend to end up poorer than they would if they had never experienced mental health difficulties; and being poor tends to increase your chances of becoming unwell.

“Mental health services are a vital part of helping people to have the best life they can have but even the best funded; best developed mental health service cannot remedy situations of economic and social inequality. While a focus on prevention is laudable it offers little for people who are already unwell and offers nothing to people who currently have chronic health conditions. No political party is currently answering the question of how we improve the quality of life for those who are already unwell and will always be some variety of unwell.

“I’m looking forward to a political debate about what it means to have a mental health difficulty in the UK and for a mature consideration of the ways in which the common levers of public policy can make life better or worse for people with mental health difficulties.”

As I have written elsewhere, we are still in anticipation of the independent Mental Health Taskforce’s five year mental health strategy.  Even this document, concerned only with NHS mental health services, seems according to some sources to suggest a far greater outlay on meeting mental health need than is currently budgeted.

It would be interesting to see the effect of creating a Minister for Mental Health in  Government.  My sense is that such a role in a majority government would open a can of worms with which few Westminster governments would be comfortable.  In fact, one of the most dangerous things an existing government could do would be to fully take on the process of embedding mental health and mental wellbeing at the heart of all spending decisions.  We might like it but I’m sure any Chancellor would be less than keen.

When thinking about the needs of people with  mental health difficulties in England, the more you look (and listen), the more you find.

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

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Personal budgets and mental health: Scotland isn’t England

Personal budgets for people with mental health difficulties to use to find ways of meeting their own self defined needs are more often debated than seen in the wild. Mark Brown reflects on Scottish experiences of making personal, or self directed support, budgets happen and where England might be pursuing a different path.

On 17th of December 2015 the Social Care Elf published a summary by Martin Stephens of the paper  Power, Choice and Control: How Do Personal Budgets Affect the Experiences of People with Mental Health Problems and Their Relationships with Social Workers and Other Practitioners?.  The paper details ways patients with enduring mental health conditions in England, and the practitioners that support them, are affected by personal budgets.

The paper argues that the ways in which people understand personal budgets and the power they do or don’t involve influences how those budgets work in practice.  In England the personal budgets picture is still somewhat muddy.  It’s always like Anarchy in the UK (Coming sometime maybe); a perpetual ‘next big thing’ that never quite arrives either in health or social care and is one that excites as much rhetoric as it does action.

Based upon interviews with people with enduring mental health difficulties who currently have personal budgets and the professionals who support them, Power, Choice and Control found there was a degree of ambivalence on the part of practitioners about personal budgets, with the suggestion that some were not comfortable with relinquishing control.

On the face of it, personalisation always looks like an obviously good deal.  The proposition ‘would you like to choose what services you receive to support you and what those supports are?’ feels naturally better that the proposition ‘would you like  someone else very distant from you with a vague idea of what you need deciding what should be available near you that might meet your need if you qualify for it and they have space on their books?’  In practice, as is often the case with mental health and disability more widely, it just isn’t that simple.

According Stephens’ summary of Power, Choice and Control, much stress was put upon the service user to be their own advocate: “Many participants described taking on responsibility for each part of the process, assessment, support planning and advocating for the plan with social workers and managers. While this could be empowering for some, others found this somewhat of a burden.”  Some professionals felt more comfortable when service users were grateful for their budget and some service users felt they should be grateful, being reluctant to negotiate the amount of funding their budget represented.

Power, Choice and Control suggests that direct payments – cash in your bank account after your local authority has signed off the plan you have drawn up – are the primary way that personal budgets in mental health would work.  Attitudes to this differ, as Stephens summarises: “Service users gave accounts of what seemed more like a passive approach to accepting the responsibilities of managing their personal budgets, rather than deliberate resistance. They reported a lack of interest in having control or that practitioners just took over and did not give them the chance…  some social workers in the study believed that some long-term mental health service users and those who were still unwell were unwilling or unable to assume responsibility for managing the personal budget.”

The equation for the way in which personal health budgets should work could be characterised as ‘What I have + what I need = What is possible’.  Unfortunately, this equation in England appears to start in the wrong place, looking more like ‘What is possible = what you can have + what you already have.’

It’s different in Scotland

In Scotland Self Directed Support (SDS, the Scottish name for a personal budget) is law.

In November I was lucky enough to be invited to Edinburgh to contribute to ‘Taking a Chance’ an event on Self Directed Support (SDS) and Peer Support.  The event was a kind of ‘how do we make this happen?’ day.  I summed up a similar event in Glasgow in August 2012 just before the assent into law of the Social Care (Self-directed Support) (Scotland) Act in November of the same year.

The event I summed up in 2012 was much closer to a ‘should we make this happen?’ day, with a fair few more dissenting voices asking whether personalisation and the taking of personal budgets were a good idea for people with mental health difficulties.  The debate was very similar to the issues outlined by Power, Choice and Control.  People worried about the capacity of others to manage their own budget, defending other users of services they considered to be less able than themselves.  People were suspicious that these personal budgets were a cloak for cuts to services.  Service providers were worried that such personal budgets, implemented at a time when their block contracts and grants were being reduced would seriously curtail their ability to provide the range of services that they currently offered.  Other fears voiced to me included the idea that SDS turns individuals with disabilities or health needs into employers; giving them the added worry of dealing with payroll, employment law and the like, something that the range of options in law in Scotland avoids.  Another concern was that a system moving to SDS would remove the opportunity to vote for the status quo; making people take on self managed services when they really want someone else to manage their care and support. .

In contrast to the last time I was in Scotland discussing SDS, there were far fewer voices opposing the idea or personalised budgets now that they have, in theory, been implemented.  This is arguably because the Act takes into account many of the criticisms of the idea of personal budgets.  In Scotland SDS can, in theory, be taken a number of different ways. A person’s individual budget can be:

  •  Taken as a Direct Payment (a cash payment)
  • Allocated to a provider the individual chooses. The council or funder holds the budget but the person is in charge of how it is spent (this is sometimes called an individual service fund)
  • Or the individual can choose a council arranged service
  • Or the individual can choose a mix of these options for different types of support

Interesting for those of us in other parts of the UK is Option 4, the choice to be able to have an ‘all, some or none of the above’ option depending on what it is you want to happen.  This removes some of the the all-or-nothing binary from SDS that still seems to bedevil thinking about personal budgets in England allowing someone to choose what kind of decision making is most appropriate for them.

Listening to the speakers across the day I picked up that while there might be an open field of possibilities once you access a Self Directed Support Budget, you first have to squeeze yourself through a very tight gate with a very stern keeper, one perhaps keen that you stick to the footpath rather than straying off it and upsetting the sheep.  To receive an SDS budget a person still needs to pass through an assessment of their needs and, as is always the case it seems, the assessment process is often not properly funded as a separate service.  This means that the promised land of choice is often over a sea of complications.  I heard someone say that there were less people accessing mental health support directly from having mental health as their primary need and more people with other health needs who were accessing mental health support in addition to support for their mental health needs.  The suggestion was that it was easier to claim a personal budget for physical needs than it was to claim one for mental health needs.

This frustration is echoed in Power, Choice and Control, with Stephens summarising: “After support plans have been agreed between service users and practitioners, the plan has to be approved by the local authority. Hamilton et al found that service users experienced this process as confusing and disempowering. Practitioners also reported feeling powerless over these decisions, although sometimes used this as a way of distancing themselves from responsibility for the decisions made.”

As ever the best case for personalisation was made by someone who desperately wants it to work.  One of the speakers, herself supported by a personal assistant, made the case for the way that self directed support can turn the key to unlock greater possibilities and opportunities.  She spoke about the ways in which she didn’t want a service as something to attend: what she wanted was the addition of services in her everyday life that would augment the situation and remove restrictions imposed by her condition.  She spoke of the frustration of knowing what she needed to clear some of the blockages in her life but being offered things only once they had passed through the prism of service delivery.  She spoke about the ways that what she wanted might be something very particular; but what she was offered only resembled what she wanted in a very rough way.  An example of this might be want to pay a cleaner but ending up with a support worker to support you doing the cleaning yourself.  To a service provider this look right, but to a person? Not so much.

Disruption

For me it’s impossible to discuss personalisation without discussing disruption.  Despite being a movement about putting the person with needs at the centre of choosing how to meet those needs, personal budgets or SDS also requires business models different to the ways in which previous forms of support have been provided.  The old block grant or contract model could be described as someone somewhere buying a big chunk of something and then offering it to people: like buying a palette of baked beans from the Cash and Carry and then handing them out to whomsoever qualifies for a tin. The creates economies of scale – it’s cheaper to supply lots of the same thing – and makes it easy to plan for the future because you always know how many tins you’ve given away and how many you have left.

In theory, a personal budget is more like going to a shop and perhaps buying beans.  Or sending someone else to get you some beans.  Or deciding you don’t want beans at all.  This means that you can’t just buy a load of beans from from you block grant or contract.  You have to think about what else people might want to buy and to work out how you might make it available.  It might turn out that people do want beans; but beans made to their own recipe.  Or a variety of beans that you can’t get from the Cash and Carry.

Of course, care and support are nothing like beans; but this cuts both ways.  People who are worried by personal budgets point out that they may deprive people who don’t meet the threshold for a personal budget having support to access; as the money arriving in the form of block grants and contracts enabled larger organisations to survive and gave the financial security to develop and offer other kinds of support.  They would argue that it’s possible to deliver a personalised service within an organisation that previously would have rolled out a more standardised set of services.  On the other hand, proponents of personal budgets point out that what is being offered by such block grants and contracts is, at best an approximate match for what people want and need and is designed around the needs and structures of organisations rather than the wishes and needs of people.

As such, SDS and personal budgets present a particular challenge to voluntary sector organisations such as charities who have often relied upon the larger, regular payment of grants and contracts to employ staff, rent or buy premises and to maintain other activities like fundraising or the development of other services.   As I’ve said elsewhere at much greater length it’s hard to see how existing mental health orientated  organisations will contend with increasing take up of personal budgets without fundamentally changing both what they offer and how they offer it.

But if the larger existing organisations don’t survive, what kind of organisations will come into existence?  In England this discussion does not have the prominence of other debates in personalisation about resource allocation, assessment and management of budgets; suggesting that south of the border the discussion remains firmly dominated by those who engineer systems and develop policy rather than those that tailor services to the wishes of those who might choose to use them.  The English debate about personal budgets is, perhaps, dominated by the interests of those closest to the current seats of power in health and social care.  It’s notable how little heard the people who would actually be involved in creating the new kinds of organisations and services that would meet the needs of people with enduring mental health difficulties as they are now, if indeed those people exist.  As was the case in Scotland three years ago, the money is not there to develop a service that people with enduring mental health difficulties might actually want to purchase until enough people have both opted for a personal budget and passed the criteria to receive it.  Yet, until there are examples of the kinds of new services that people might opt for and strong and convincing examples of what is possible; people (and professionals) will quite sensibly wait and see.  I described this to the audience of the event in 2012 as being like a school disco where everyone clung to the walls waiting for someone else to take to the floor and get the dancing going.

Peer services

The day in Edinburgh was also concerned with the ways in which peer support, support provided by other people with direct experience of mental health difficulties, and how that could contribute to SDS.   A number of the speakers came from organisation based in rural areas; where services and responsibilities were spread out.  It struck me that these areas presented far greater learning for the idea of SDS and personal budget service delivery than the examples taken from larger urban organisations.

One of the challenges of service delivery is that services require density of customers or service users to be viable.  How many service users they require depends on how much it costs to run the organisation and how much it is reasonable to charge for the service.  Traditional, non-personalised, services create density by making things happen in a particular building at a particular time with the expectation that everyone who is interested will come to them, allowing for the economies of scale.  Rural areas cannot deliver services in the same way. While the prevalence of mental health difficulty might be exactly the same; there a few people per square mile, meaning that people have to travel far further and, even then, there may not be ‘enough’ people with similar needs to run a viable service on the model of an organisation with standing staff and premises.

The experience of people with mental health difficulties in more rural areas has often been ‘we’d love to provide you with the support or help you need, but we’re sorry that there just aren’t enough people with similar needs and wishes to you to make it viable to run a service. So there isn’t one.’  The ways in which colleagues from such areas have gone about developing services that people need and value actually tells us much more about one of the ways in which personalised services might develop outside of being delivered by organisations trying to convert from block grants and contracts to personalised services where the amount of demand might not demand a full time staff post or a long term premises.

The speakers from rural areas spoke about the ways in which they started small and made use of peers and peer workers to build things from what was available.  As I’ve said before, I think micro-provision holds the greatest promise for providing the kinds of specialist services that people with enduring mental health needs who qualify for personal budgets need and want:

“Micro providers, being very small, have a business model that is not based on achieving economies of scale but upon limiting the cost of each transaction.  In practice this means delivering a service that is only supposed to have a limited number of clients.  In a lot of situations, the needs and desires being met by personalised services will not lend themselves to density.  The chances of there being sixteen hundred people in a town of 60,000 people, with long term severe mental health difficulties and who want to take courses in linux coding are slim.  The chances that there might initially be ten is possible.  It can be guaranteed by finding those ten initial people and setting up the micro-provision to serve them at a price that works for both parties, a process otherwise known as market research.

There is a a kind of virtuous circle in micro-provision in that it can be the opportunity for people with lived experience of mental health difficulty to start small businesses or charities to provide help and support to other people with mental health difficulties.”

Power, Choice and Control suggests that people valued support from peer organisations when it came to managing a personal budget, continuing to see peer services as providing mainly support and fellow feeling.  It struck me that some of the experience of the speakers from more rural areas of Scotland suggests a very different role: people with mental health difficulties actually become the providers of services which can be purchased by those who manage to finally achieve a personal budget.

In a national situation where austerity policies are eroding the existing landscape of larger providers, with local authorities being required to make even great cuts to ‘non-essential’ services, it is perhaps the experience of these rural organisations that have the greatest lessons for the ways in which to keep choice viable for SDS and personal budgets in general.  I’m led to understand that in the new year Scotland is exploring ways of develop the capacity of user-led mental health organisations and groups to deliver such services.

As I said to a room full of people in Glasgow in 2012: what we need to make personal budgets is good things for people to buy with them and imagination about how to make them work.  The measure of them will be whether they make people’s lives better on their own terms; so we require not compliance but cunning, bravery, and to find a way of tasting what a better life might be like.  It’s not good enough that people with mental health difficulties are held back for want of being able to find a service that makes their life more them-shaped.

It was evident that Scotland is still finding its way through SDS; but even in a drafty methodist hall in Edinburgh it was clear to me that a conversation about how we can solve problems and make personal budgets work is better than a never-ending discussion about whether we should even try.  Scotland hasn’t solved all of the problems; but it might just have a much better idea of what exactly those problems are.

In situations where the needs, desires and situations of people with enduring mental health difficulties have changed remarkably since the setting up of our existing services and service delivery models, it vital that we begin to look at making sure that people can get what they want and need to have the life that they want; need; and, more importantly, deserve.

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

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Is clinical research essential to develop a good mental health app? #mindtech2015

The below is a speech made by Mark Brown opposing the motion “This house believes that clinical research is essential to develop a good mental health app” at the Elfie Debate – Can research really tell you how to make a good mental health app? which was held in London on December 2nd 2015 as part of Mindtech 2015.

 The motion I’ve been asked to oppose tonight is: “’This house believes that clinical research is essential to develop a good mental health app”

Interestingly, this isn’t the original motion we were going to debate tonight.  The original motion was: “Can research really tell you how to make a good mental health app?”

On the surface they sound like two very similar propositions, when in fact they are very, very different.  This  means that tonight’s debate is fought upon the ground of clinical researchers, bringing the discussion of mental health apps firmly under the heading of medicine.  It means we’ll be debating risk, efficacy, morals and ethics.  In this debate apps will become medical devices, with clinical researchers valiantly saving us from terrible, harmful, ineffective and dangerous apps.

On those grounds it is obvious to me that my colleagues defending this motion will win on those grounds.  None of us want dangerous, harmful apps out there in the world seducing the unwary and  sucking in the lost and worried with their snakeoil charms.

It seems to me that we have a situation analogous to the debate that once divided the field of public policy analysis.  Once, public policy analysis was about studying the formulation and implementation of public policy to understand how it did and didn’t happen and how it did and didn’t work.  Then some analysts questioned whether it was their job to sit on the sidelines just making knowledge.  They thought ‘if we understand this stuff so well, we should start to get our hands dirty’.  In their 1984 book ‘The Policy Process in the Modern Capitalist State’ Chris Ham and Michael Hill define the difference as being analysis OF policy versus analysis FOR policy.

Recently, in a discussion at the Mental Elf site about the lack of clinical evidence for many popular depression apps I said: “At the moment, rather than being a true partner The NHS is more like an in-law, tutting and shaking its head that tech is doing it wrong but giving no guidance as to how mental health apps might do it right.”

If researchers are not careful they will become gatekeepers of innovation rather than enablers,  a dead hand upon ideas rather than an encouraging embrace.  People developing apps want your knowledge and want your insight, but blimey are you often sniffy about actually getting it to them.

It would lovely to be able to subscribe to the idea that we are engaged in a glorious shining path toward enlightenment, with each researcher standing upon the shoulders of the generation of researchers before them, each new bit of research leading us closer to the promised land.  But I don’t think that’s how it works in the real world.  Clinical research is an industry like any other.  And it’s not one that’s well aligned with the realities of making tech products happen, at least not in mental health in the UK.

In an ideal world academic and clinical research would be at the forefront of pushing the boundaries of what is possible via digital technology for better mental health.  Instead clinical research is trailing behind.  The cutting edge is elsewhere.

The clinical world underestimates the financial risk involved in creating genuinely useful mental health apps, is often blithely unaware that money is a ticking clock.  The assumption is that everyone who is a non clinician who tries to create an app that will help people with their lives lived with mental health difficulty is at best a kind of good spirited bungler and at worst a venal wannabe tech oligarch.

The pipeline between mental health research and mental health  implementation is broken,  if it ever was established. Cutting edge mental health and tech research should be able to find its way to partners who can turn it into applications that have user experience at their heart.  Academic and clinical research is often awful at the kind of quick hunch checking that user centred design requires.  It often wants to have a hypothesis to test before speaking to any real people about what the hypothesis should be.  Too often it confuses knowing with acting.

Whether you like it or not, Silicon Valley is not just a place.  Silicon Valley is where clever people who know things, like clinical researchers, meet with people who have money and who can help take cleverness to market.  Many of the technologies that made up the original iphone were developed in one way or another through public funding.  It took someone who cared about the consumer to combine them into the world changing device we all have at least seen in the hands of others, in not in our own pocket.

I’ll let you into a secret, Docready, the tiny HTML5 app that helps young people get ready for their first ever visit to the GP which I was involved in the development of was based on no clinical research whatsoever.  The concept and the final implementation of the app were all done by working closely with young people who actually have the problem that it solves: the fact that it’s really scary going to see your GP about your mental health.

It’s not a problem that came out of the clinical evidence base, it’s a problem that came out of the lived experience base, the problems people really have base.  We’ve been knocked back for funds because we couldn’t prove where in the clinical evidence base the ideas comes from.  Not everything that will help people with their lives lived with mental health difficulty is clinical.  Although clinical research can help to understand what clinical impact it has, if any.  A signal cane for a partially sighted person is a big intervention in their lives, but would you evaluated it using clinical research tools?

If my colleagues supporting this motion fail to define the how and when of clinical research rather than focusing on the why, I’d suggest you should reject the motion even if you mostly agree.  Which you probably will.

Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

 

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How can digital technology make better mental health for all?

Text of keynote speech given my Mark Brown to the Royal College of Nursing 21st International Network for Psychiatric Nursing Research conference: “Building new relationships in mental health nursing: opportunities and challenges” in Manchester on 18th September 2015.

The question I’m going to try to answer today for you is ‘how can digital technology make better mental health for all’.

I’m in an interesting position speaking to you today in that I am neither a nurse or a researcher.  I don’t even work for the NHS.

I have mental health difficulties myself.  Increasingly over the last couple of I’ve become known for turning up at events and shooting off my mouth about the interaction between digital technologies and mental health.

Digital technology really just means technology that doesn’t have moving parts, isn’t made out of cogs and pistons and crankshafts.  In the context of today, what I mean by digital technology is things that use computing power and which can interact with the world and each other through connection to the internet.  So we’re talking about computers, phones, tablets and the like but also the software, apps and programs that run on them.

Roughly speaking I’m going to be talking about why digital technology might make a difference to the industry of helping people; why we might avoid thinking about digital technology and why it seems scary; what digital technology means for mental health nursing and some ways in which we can actually help digital technology to happen that might make the world a better place.

One of the reasons I’m so enthusiastic about digital technology is that digital technology has changed my life.  I stand before you as a kind of cyborg, like a kind of very low budget Six Million Dollar Man (For those of you that are a bit young, the Six Million Dollar Man was a man who was in a crash who was rebuilt with robotic parts.  Imagine The Terminator in flares solving seventies crimes.)

Every day I rely upon digital technologies to offset my cognitive deficits; to help me to plan and manage my time; to stop me getting lost between appointments; to keep up with important information; to make it possible for me to work in conditions that do not exacerbate my condition and to make it possible to communicate with peers.

Without this technology I have to travel long distances to do important tasks; am at risk of missing out on information vital to my wellbeing and am in danger of losing my job through lack of adaptation and loss of effectiveness.

Through finding the right combination of digital technologies I’ve become far more able, independent and able to take part on my community.

It sounds amazing and complex.  What is this special mental health technology?

My phone.

It’s basically a combination of stuff like calendars, email, maps and the ability to store documents online.  All of the amazing stuff that an average cheap laptop and a rubbish phone make possible when I can get online has changed my life.  I don’t need to commute to the office; my phone reminds me of appointments, twitter and other social media keep me in touch with people and what’s happening.  Nothing specialist.  Nothing specifically mental health intended.  Just basic stuff that everyone has if they have a computer or a smartphone.  Just useful digital tools that I use to solve problems that I have and that offset my cognitive deficits and to mitigate the effects of my mental health difficulty.

These everyday, non-specialist apps and functions are often the difference between me being able to do my job and not being able to do any job at all.  They aren’t even designed with a specialist mental health purpose in mind but make a massive difference to me and my wellbeing.  Now, imagine we began to develop digital apps and services or to use digital tools in a way that would solve specific problems that people with mental health conditions experience; or to use digital technologies to provide new options for people to access the help we provide in way that suits them.

In mental health, our prime mechanism is people doing things while other people are in the room.  That’s what we think of first.  We think of support as being you, me, together.  Or you, me, together plus some sort of medication or treatment.

This leads to us into a kind of trap when we think about the potential of digital technology in mental health.

As it stands, what delivering better mental health for all means depends on the professional platform from which we survey the question.  To nurses it looks like nursing.

I can see why some people reject digital technology.  One: it’s about digital and, wow, do some people have some fears about digital. Two: it’s about personal preference and choice which, again, some people have a problem with in a health context and Three: it’s about little messy things about people’s lives not big massive shiny things made out of numbers and it involves, GASP, spending time with people who might not even work for the NHS.

That can make it difficult to see where digital technology can fit in; especially if our primary experience of digital technology at work has been some god awful new IT system that takes four times longer to use than the way we used to do things.  The NHS has a history of buying very big, very expensive and very crap IT.  Luckily that’s not what I’m advocating.

So what can digital technology actually do?

Once digital technology was a world of desktop computers, each one whirring away on its own.  Then the web arrived and suddenly each computer wasn’t on its own. Suddenly computers all around the world could talk to each other which meant that information didn’t need to stay in one place and one time and neither did services.  Then smartphones came along and we realised that the internet didn’t have to be inside a computer plugged into the mains.  It could be in our pocket or our bag.  Suddenly information and communication and services could be wherever we are.  Each year the cost of computing power goes down and the things that digital technology can make possible grows.  The smartphone in your hand now is more powerful than that computer that sat on your desk.

It’s the combination of the internet and devices that has really changed things.  Smartphones and tablets are versatile little devices with a variety of sensors which can do anything from knowing where you are in the world, to knowing what time it is to sensing vibration or knowing when you should leave the house to catch the train you booked.

Digital technology like this means that things, as long as they’re digital, no longer have to be in one place.  As long as you have a device to access it, an online service can be provided to hundreds of different people in hundreds of places at once at very little extra cost.  Or a patient record can be wherever the patient is while also being where a professional is.

Digital technology also means that you can use lots of different methods of doing the same thing.  There’s lots of different ways to send an email; but all of them are still emails.  If you have an android phone, you can change the keyboard if you don’t like the one you’ve got.  People can carry a pocketful of tools wherever they go.  We all, for a very low cost, can put together own own suite of useful things, communicate instantly with friends and strangers and interact with a variety of services.

Digital technology isn’t that ‘that weird thing on computers’, it’s a part of people’s lives.  Increasingly it’s a layer of connectedness between people and between people and tools and information.

Digital means that we can spend time to develop tools for people to use which can be replicated with minimal cost.  If we make it and get it right and it does a job well, we can extend the number of people who can benefit from it with very few additional resources.

Digital technology can sometimes make possible something that currently isn’t possible because it’s too difficult, to person-time intensive or needs to happen in one place at one time where someone can’t be.

We could, if we wanted, tomorrow instigate the biggest ever study into the effects of psychiatric medications if we wanted.  People are already using wearables to track their heart rate, their activity, their sleep. People are already tracking moods and calories.  We could just say ‘hey!  people! contribute all of that data to us along with what medication you’re taking.  Then we’ll try and see what it tells us’.  We could find ways of personalising dosage of that medication from that data.  It would tell us lots of things that we hadn’t thought to ask about.   People could generate the data for themselves and then hand it over willingly, in all of its complexity for others to make sense of, like happens in the citizen science movement where people put up home-made weather stations in their gardens to collect local level climate data.   But we can’t be arsed.  Or more correctly, we just haven’t got our heads around the possibilities.  I’ve been involved in the development of some digital tools and digital projects over the last couple of years; so it probably makes sense for me to actually give you an example of the potential in digital technology for making things happen in different ways.

I was lucky enough to be part of the team who development of Doc Ready, a very simple web based app that does one thing and one thing only: it helps young people (or anyone else) prepare for their first visit to the GP to talk about their mental health.  It was delivered by a team comprising of Enabled by Design, FutureGov, Neon Tribe and my own company Social Spider.

The idea for Doc Ready came from young people being really unhappy about their experiences of talking to their GP about mental health, feeling that GPS often misunderstood.  Their suggestion was for an app that would work like a Star Trek type translator for GPs that would turn teen speak into doctor speak.  The problem that had been identified was a real one – young people feeling that GPs didn’t understand them – but the solution wasn’t quite right.

Still working with young people, we turned the idea around, recognising that it would be impossible to change the entire profession of general practice and came up with a tool that helped young people to prepare a checklist of what they wanted to talk about with their GP by giving them a cloud of different experiences, like ‘I feel sad’ or ‘I’m always late for school or work’ or ‘sometimes my thoughts make me scared’, which they could choose from to make a kind of agenda.  The idea was that young people could use this tool to prepare but also that the tool would help them to see the kinds of things they were ‘allowed’ to say to their GP.  It’s up for an international service design award in New York next month.  We got the basic function right by involving young people at every stage of the process of development; getting to co-design, test, break and strip it down until it did one thing really well.

It’s already been used as the basis for a web app to help young people to prepare for CAMHS appointments commissioned by a Trust in the north of England with more versions in the pipeline.

So, with Doc Ready we didn’t directly treat young people’s mental health but we did find a way that young people could make things work a little better so that they could get help for what was really troubling them rather than doing that thing we all do of coming out of their doctor’s surgery saying ‘Damn! I wish I’d asked them about that!’

For me, the approach we took with Doc Ready is key to thinking about using digital technology to help people’s mental health.  It’s not about big, grand things that replace entire care pathways. It’s about finding small well defined problems people really have then trying to solve those problems.  A lot of the time the solution to the problem won’t be digital at all, but if it is digital we need to know that we’re getting it right because now, more than ever, we need better solutions to problems.

The state we are in

There are many things that we know to be true about what people should and shouldn’t do about their health. Science is awesome. But science and healthcare aren’t quite the same thing.  Healthcare is what happens where technology, culture, practice, knowledge and resources meet people’s real lives.

In my view, we’ve reached, at least for the time being, the end of the era of big breakthroughs in health. At the very best we’re at the end of the era where a massive breakthrough will appear in enough time to sort out the gap between the funds we have available and the needs that we currently aren’t meeting.  A lot of people need things they currently aren’t getting.  We’re stuck with the treatments we have, many of the structures we have.  We still, sadly, have the historic overhang of a system that finds it difficult to see mental health difficulty as chronic rather than episodic; far more comfortable with treatment than support.

I think the area where our advances will be made, at least in the short term, are in the sweating of what we do have; continuing to explore new ways of making a bigger impact.  But we’re not going to get much that’s really new from traditional sources.  And certainly not without a massive change in the way that’s funded.

If we make sure that we get digital right; it shouldn’t take any of the existing stuff we do that works away; it just provides an entirely new tool box to get things people need to happen to happen.

In a country where we’re lucky to live longer, but where we are more likely to spend more of our lives living with multiple health conditions and disabilities, digital technology presents us with a chance to solve some problems, mitigate others, or alter the condition of life around more.

What it’s looking like to me is that in situations where mental health need is rising, resources are falling and no great breakthrough is around the corner; we’re going to need to find ways of getting more out of what we’ve got.

In mental health, we are still stuck with the history of stigma, of being hidden away from communities, of our work being secret.  The places where we work have the historical legacy of being big buildings on big campuses where people who were unwell were brought until they were well enough to be let out again.  Mental health has felt like it was about bricks and mortar and staff. We still talk about mental health beds, despite the fact that the majority of people with long term conditions are not currently inpatients.  In mental health , because system change is expensive and because we’ve never had enough money or enough people, we’ve tended to try to make patients like me fit the services we provide.  Digital, if we get it right, can help us to do the opposite and to fit services and support to people.

Digital technology brings us together

As some of you will know, I tweet a lot.  I think social media have created spaces where people can meet each other and learn.

By making possible connections that could only be made previously through arduous effort and often through being lucky enough to meet the right person in the right place at the right time; digital technology can connect us with people.

Social media makes it possible for us to connect more easily with colleagues and with the latest news and research, but it also makes it easier to connect with the people we’re meant to be doing this for: people like me.  People who experience mental health difficulties themselves.

For the first time in history it’s possible for anyone with an interest in mental health to have direct access to people with mental health difficulties and their lives.   The only ways in which we could collect data from people was if they were right in front of us, so we would observe.  People learned about mental health difficulty second hand.  The link between what we ‘knew’ academically about people with mental health difficulties and people with mental health difficulties themselves was broken.

Now, if you’re interested, the lives of people with mental health difficulties in their raw and unfiltered complexity are just a few clicks or taps away.   If you go on twitter and look at the hashtag #mentalhealth you’ll see what I mean.  For the first time it’s really possible for people who experience mental health difficulties and those that provide services to meet regularly and just hang out together.  Not as client and health care professional but as people using social media to talk and share.

I’ve been running a year long project funded by Public Health England called A Day in the Life, where on four days across the last year people with mental health difficulties have just written about what those average normal days were like lived with mental health difficulties.  We’ve collected over half a million words of candid first person material about the bits of life that research doesn’t usually see.  We’ll be analysing it to see whether this first-of-its-kind tells us anything different about what life with mental health difficulties in England is like to more traditional forms of research.

Social media presents an opportunity for mental health professionals to become an organic part of the communities they serve by using social media to talk about what it’s like to do their job; to literally be a professional in public.  Public professionals mix with people via social media (and often in real life too): they’re the person you talk to who is also a nurse, or a the person whose blog you read who is also a doctor.  Public professionals are engagers and connectors by nature.   For people like me, who aren’t in the NHS, public professionals are a point of entry, a way into understanding it better and a guide to navigating the complicated flows of information, misinformation, spin and rumour.

Social media is the biggest opportunity professionals working in mental health have ever had to be open about what we do and to help people to understand the joys, the frustrations, the debates, the difficulties and just why we care so much about doing what we do.

I’m one of the team behind the regular #weMHNs chats on twitter where mental health nurses and people who aren’t mental health nurses debate issues around the mental nursing.  If you want to come join us, if you haven’t already, we’re @weMHNurses and we’d love to meet you.

Why we might avoid thinking about digital technology and why it seems scary

While digital technology is changing our lives every day, in mental health we’ve sometimes found it hard to really see how it should apply to us.

There’s sometimes an idea, one sometimes unfortunately propagated by telehealth providers, that technology will allow you to ‘do away’ with staff teams.  Andrew McAfee Co-author of The Second Machine Age refers to this as digital encroachment, the direct replacement of human labour with machine labour.  In mental health, as in other areas of public service delivery, there are some who feel this digital encroachment as literally that: an army of computer screens and ill-understood  gadgets skulking in the shadows a bit like in The Terminator, ready to leap out and take away everything they hold dear, including their jobs.

It doesn’t have to be either/or with tech. Different people will want and need different things.  As will staff of different services. Imagine what we could do if tech could free up more staff time to do the really important things that only humans can do?  Tech needs to make things easier and better in ways that work for people.

It’s a myth that all human endeavours are equally likely to be completely disrupted by digital encroachment.  Some things will always need direct human labour.  Mental health nursing is one of them.  We should think about digital technology as a friend that might make it possible for us to do more of the things that we actually think are important.  If we, for example, made it possible us digital technology to reduce the burden of paperwork meaning we could spend more time with people, or could find ways that digital technology might help in a crisis then that has to be worth trying.  In mental health nursing, the single most valuable resource is nursing.  Let’s find ways that resource can be best used.

So how do we make this happen?

Often, the NHS has been blind to people as people.  While this has a terrible effect on patient care it also has a terrible effect on the development of services and treatments.  Often in the design of new services or interventions the actual patient, the person with the problem is the quietest voice around the table. Or in cases where the voice is loud, it’s the voice least likely to be put to a practical use.  We often don’t really know anything about the lives of the people we’re trying to help.  We can’t picture them, they’re just a hazy mass of statistics.

You can’t design anything from statistics.  Design is about engineering solutions to problems that people have.  There’s a weird thing that often happens when the idea of doing something different in health: the wrong people do the wrong bits of the job.

What need to do is to make sure that digital technology is solving problems people really have.

One of the really cool things about medical people is that you tend to be problem solvers; but you don’t need to be able to make an app or a website yourself to come up with a really good problem that someone should solve.  People do that for a living; you just need to help them to know where to direct their efforts.  In fact, the formula I would use for thinking about digital technology and innovation is:

Knowing what kinds of cool stuff technology can do + thinking about small, well defined problems = ideas for possible digital solutions.

Engineers like solving problems.  Mental health professionals know about mental health.  People know about their lives and how they feel about them. The mix of those three things makes good digital things happen.

I’ve spent a lot of the last eighteen months or so doing things that involve just being with people and trying to find out the problems they have with the way that things in lives work.

Looking toward digital in mental health gives us a chance to start small, to find little things that might help people by spending our time with people, by digging either into our own lives or into the lives of others.  It gives us a chance to build things that might initially change the lives and health of a few people, then a few more.  And then more.   Sometimes the answer is a new thing.  Sometimes the answer is an old thing in a new way or at a new time or in a new place. Sometimes the answer turns out not to be digital at all.  There are lots of techniques and structures for creating people driven design that can help you work that out. All of them go from working out with people a possible problem, to testing whether it really is a problem by checking with people, to working with people to find a solution to that problem that works for them.  All of them involve hanging out a lot with the people who have the problem.  Which is awesome and more people should do it.

Let’s make the goal of better mental health the master of digital technology rather than its slave.  Not paying attention to digital technology doesn’t mean it won’t happen in mental health.  It just means that the digital technology in mental health will be bought and built by people who understand mental health less than we do.  That’s why need to stay at the table, get our head around the possibilities and the things people need and influence what happens.

Digital technology is not a possible future, it’s an unfolding present.  Digital is already changing things.  A change you choose is much less painful than a change forced upon you.  Together we have the opportunity to make the best of digital technology so that we can make the best use of ourselves, our skills and resources.

Because if we don’t, we know that someone, somewhere in the NHS will come along and commission the wrong digital things for the wrong reason, doing the wrong things in the wrong way. Probably for the wrong people.

And that would be bloody awful.

 Mark Brown is development director of Social Spider CIC.  He is @markoneinfour on twitter.

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People, health, technology and messy smallness: In defence of people driven digital health

Text of a speech delivered by Mark Brown at NHS Innovation Expo 2015 as part of the pop up university session ‘Creating Conditions Digital Innovation’ in Manchester on September 2nd 2015.

I’m betting that a number of you are here because you’re all excited about the digital health bit of the subject.  I’m going to talk to you about the people part of people driven digital health.  That’s the messy part of health: people.  If only patients were as predictable as chemistry, then we’d have a health system that ran neatly and to budget…

So, what is people powered digital health?

Put very simply: people driven digital health is what happens in the space between what our health services currently provide and the needs that people have that are currently not being met to their satisfaction.

It’s people saying ‘this!  This is the problem I want solved!’ and either solving it themselves or contributing to the process of solving it.  People powered digital health doesn’t start big, it starts small. With the things that really irk people.

People driven digital health, when it works, is about making digital products people choose because they solve a healthcare problem that they actually have.

Sometimes it’s about people who experience particular health conditions hacking together their own solutions to their own problems.  Other times it’s about engaging in a process of discovery by spending time with people and helping them to crystalise their problems and then honing those problems to such a finely defined state that they can be used by engineers to develop solutions which then can then be tested and refined.  For it to count as people driven digital health; though, it has to begin with people.

It’s about building project structures that involve, or emanate from, people who have first hand experience of the problem the project is trying to solve, or even better, are the people who set the problem the project is trying trying to solve.  People help define the problem, people help refine the solution.  People don’t just wait to be shown what the big clever medical people have made for their benefit, presented it as if it were a handmade dollshouse presented by a proud parent on a birthday.  All the way through, people driven digital health goes back to the people who have the problem and says ‘are we getting this right? Have we understood the problem correctly?’

This is a way of working many of us are unfamiliar with, one that adds complexity rather than removing it.  When we take this path our big solutions begin to look less clean, less pure: complexity seeps into them.

But that’s only because people are complex.  Accepting that and working with it will mean that we start to find little, shiny, polished solutions to little problems that really exist in people’s lives.  And within those little solutions we might find the next big ones.

In some respects people driven digital health is a bit of a paradigm challenger, so I can see why some people reject it.  One: it’s about digital and, wow, do some people have some fears about digital. Two: it’s a about personal preference and choice which, again, some people have a problem with in a health context and Three: it’s about little messy things about people’s lives not big massive shiny things made out of numbers and it involves, GASP, spending time with people who might not even work for the NHS.

Digital gives us opportunities to do things in cost effective ways that we could never have done before.   The future is unfolding quickly and in the case of technology the rate of progress is still accelerating.  If the NHS isn’t really certain of people’s preferences about treatment and services; it is on even more shaky ground trying to guess people’s preferences around digital technology.

Science isn’t the same as healthcare

There are many things that we know to be true about what people should and shouldn’t do about their health. Science is awesome. But science and health aren’t quite the same thing.

Healthcare is what happens where technology, culture, practice, knowledge and resources meet people’s real lives.  Healthcare is not just treatments existing in a vacuum.  Healthcare a series of interconnected realms nestled within one another like russian dolls.  Healthcare for the patient, first and foremost, is what takes place in their lives – not only the illness or challenge they face but how that illness or challenge fits into their life as it is and their life how they would want it to be.  Hidden within that there are the person’s preferences, desires, wishes, dreams, aspirations and fears.   Wrapped around that are both the treatments, interventions and aids that person accesses in an effort to maintain or improve wellbeing or health and the systems by which those interventions are delivered.  Beyond that are the wider determinants of both that system and the of the life of the person who accesses it.

There’s a lot of russian dolls there.  And in a perfect world they’d all stack neatly one inside of each other.  In the messy real world they usually don’t.  Health is complex because people are complex.  When we leave out all of the things that make people people, we’re missing a huge element of what makes things succeed or fail.  We’ve been great at knowing what works in the trial but awful at knowing works in the context of real life.

Solving problems that aren’t yours to solve

Historically the people who came up with medical solutions were not the same people who were their direct beneficiaries.  This has often meant that we have not only had to train our medics to be better medics; we’ve also fallen into the trap of trying to train our patients into being better patients.  The problem solvers have understood the world from the perspective of the problem solver only, not the perspective of the people who have the problem.  In a world where we would find it ridiculous that someone else chose our car or our phone or shoes for us we will happily ‘choose’ on behalf of thousands what insulin pump they use or what telecare will monitor them.  Your healthcare intervention is part of MY life.

In health we often recognise that the ‘patient voice’ is important, but we actually have no idea what we’re meant to do with it.  We ask people what they want and then we scoff at them for coming up with daft ideas.  We ask people what they think of things and then use that as evidence of how right we we were all along.   We want people to tell us stuff about what we should do unless they start telling us stuff we don’t want to hear.

Often, the NHS has been blind to people as people.  While this has a terrible effect on patient care it also has a terrible effect on the development of services and treatments.  Often in the design of new services or interventions the actual patient, the person with the problem is the quietest voice around the table. Or in cases where the voice is loud, it’s the voice least likely to be put to a practical use.  We often don’t really know anything about the lives of the people we’re trying to help.  We can’t picture them, they’re just a hazy mass of statistics.

Involve people

You can’t design anything from statistics.  Design is about engineering solutions to problems that people have.  There’s a weird thing that often happens when the idea of doing something different in health: the wrong people do the wrong bits of the job.

Engineers like solving problems.  Health professionals know about health.  People know about their lives and how they feel about them.  If you add those three together and find a way of making sure each can use their expertise to make something you begin to get possible solutions that people can try, break, hate, love, ditch, run with or take to their hearts.  It makes things people can test.

People driven digital health gives us a chance to start small, to find little things that might help people by spending our time with people, by digging either into our own lives or into the lives of others.  It gives us a chance to build things that might initially change the lives and health of a few people, then a few more.  And then more.   Sometimes the answer is a new thing.  Sometimes the answer is an old thing in a new way or at a new time or in a new place. Sometimes the answer turns out not to be digital at all.There are lots of techniques and structures for creating people driven design that can help you work that out, whether as a health professional or as a person without a medical title.  All of them go from working out with people a possible problem, to testing whether it really is a problem by checking with people, to working with people to find a solution to that problem that works for them.  All of them involve hanging out a lot with the people who have the problem.  Which is awesome and more people should do it.

So what’s this got to do with me?

You might be thinking: yeah, so what? Why should we think people driven digital health is important?

I think the area where our advances will be made, at least in the short term, are in the sweating of what we do have; finding out how to make what we have work better and taking what we know into areas of people’s lives in new ways and using a different set of resources.

In my view, we’ve reached, at least for the time being, the end of the era of big breakthroughs in health. At the very best we’re at the end of the era where a massive breakthrough will appear in enough time to sort out the gap between the funds we have available and the needs that we currently aren’t meeting.  A lot of people need things they currently aren’t getting.  We’re stuck with the treatments we have, many of the structures we have.

In a country where we’re lucky to live longer, but where we are more likely to spend more of our lives living with multiple health conditions and disabilities, digital presents us with a chance to solve some problems, mitigate others, or alter the condition of life around more.

In a world where digital will play a bigger role in our lives and where health care will become both increasingly complex and increasingly financially challenging  People driven digital health is about people making sure that technology in health care works for them, not against them.

It’s about people making digital powered health services that  don’t waste their, and everyone else’s, time.

If you want it to happen, stop trying to commission big as if you know everything and start to go small, asking people about what really gets on their nerves about how your service works.

If you want it to happen, you’re probably going to be commissioning as many processes as you are final products.

People powered digital health is about people making sure we get digital health care right because patients have to live with where we get it wrong.

Mark Brown is development director of Social Spider CIC.

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