The Future Patient – A manifesto for patient-led health and healthcare

Background 

The Future Patient Manifesto is a picture of the possible future role of patients and carers – those people who have had or have, life-changing illness, injury or disabilities and who have used, or use, healthcare services regularly.

I don’t mean to be too grandiose. But the ideas below outline what patients and carers could and should be able to do in order to support improvement and transformation of healthcare. it describes both the process towards, and the outcome resulting from, real patient-professional partnership working. I hope that it might form the basis of long term strategy in health services to make them truly patient-driven or patient-led.

These ideas are founded on my health and healthcare experiences from being an adolescent with a serious back injury, through watching granny suffer dementia and seeing my mother care for her, through six years of psychiatric illness, ten years of caring for my mother with severe depression and neurological disease and witnessing the deaths of my mother, father and close friends and relations in quick succession. It is grounded also in three decades of work trying to support better working between patients and professionals in order to improve services. It is fueled by a deep sense that ‘patient and public engagement’ is not working and itself requires transformation.

I have been inspired by many ‘patient leaders’ who are now beginning to succeed in reshaping health and healthcare. They are moving beyond traditional engagement structures and systems and performing different roles in order to change the cultures and systems of healthcare. They include pioneers like Alison Cameron, Anya De Iongh, Michael Seres, Ceinwen Giles, Trevor Fernandes, Oli Anderson, Dominic Stenning, Dominic Makuvachuma-Walker, Karen Maskell, and many many more.

I have been deeply influenced by working with Mark Doughty at the Centre for Patient Leadership. This manifesto is partly motivated by recent disappointments about the way our work and ‘patient leadership’ has been co-opted by the system. At a personal level, this statement is my way of resurrecting meaning and hope from what has happened as my confidence has been shaken. To me, it serves as a foundation for action and a direction of travel. I hope it might do the same for others.

The vision for the future patient is based on a belief that patients and carers do not have a sufficient say in healthcare policy and decision-making. I am weary of politicians, policy ‘experts’, health professionals, managers and even some patient groups, purporting to articulate our interests and make professionally defined assumptions about what needs to happen.

I do not ‘represent’ anyone. But I do have an emerging vision of the role of patients and carers in the design and delivery of future health and healthcare services. I believe that the future of health and healthcare services is only sustainable if this vision becomes a reality.

The Future Patient Manifesto is part of a picture of what health and healthcare might look like – what can, should and will happen in order for health and healthcare to be patient-driven and truly patient-centered.

These are only ideas and a work in progress. I hope that it helps in some small way to bring on the day when patients, service users and carers – like many marginalised groups before us – become true partners in policy and practice decision-making.

 

The Future Patient will…

  1. Be in control of their own health and resources – they won’t be ‘put’ at the centre of their own healthcare – but help lead it. Health professionals will work with them to serve their needs above those of any institution or professional silo.
  2. Be in charge of their own information (about their body, mind, support, care and treatment) and be full partners in shared decision-making, able to give permission to others in the system to share information when and if necessary.
  3. Change the face of healthcare through increased use of technology and social media – driving changes in healthcare policy and practice that make traditional models of care delivery obsolete.
  4. Support better health and well-being in the community as well as improvements in the system, alongside other citizens and community champions.
  5. Be full partners in planning, designing and undertaking research – from informing priorities to working with researchers to design and deliver implementation of findings.
  6. Reshape clinical and non-clinical education by co-leading the design and delivery of local and national training and learning.
  7. Work in equal partnership with health professionals and policy makers at every level – moving beyond being ‘engaged’ and fostering true dialogue. They will be joint decision-makers on health policy, regulation and practice.
  8. Work together to pool resources and become joint commissioners of health and healthcare services. Patient-led commissioning will see patients forming their own organisations to commission services.
  9. Be entrepreneurs and innovators – supported and supporting each other to invent and apply new technologies to their everyday lives and hence transform ways of working.
  10. Co-deliver services, moving from advocacy and peer-to-peer support, to being fully fledged partners in the healthcare delivery team. Patient-led organisations and healthcare delivery teams will become the norm.

I would love to know what you think, and what else should be in there.

(c) David Gilbert 2014

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25 thoughts on “The Future Patient – A manifesto for patient-led health and healthcare

  1. Hurrah. Finally something to support that is grounded in lived user experience and makes sense of the power question in healthcare relationships – which most people are still in denial about.

    If patients and the public aren’t the future of healthcare, then it really doesn’t have a future. Of course, the NHS elite will insist they are doing all of this already. That’s just the problem; THEY are doing it instead of patients doing it WITH them. Of course there are some honourable exceptions, but far too few to change the NHS culture which is about attitudes, relationships and behaviour.

    Patients are already at the centre of healthcare, especially their own care; they don’t need anyone else to “put” them there. The “Future Patient Manifesto” shows a clear way forward, let’s own it and back it.

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  2. Bravo David. So much thought and so many good ideas here.

    Do you think the future patient could also take more responsibility for his/her own health, including adopting a mindful and sustainable approach to healthy eating and drinking, taking appropriate exercise, and so on?

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  3. Really great blog David. A question for you… As a clinician, I know that many people I see don’t tell me (first off) that they want to be in charge of their own health. Sometimes that’s the last thing on their minds…..they just want ‘help’.
    Yet I know that when people do feel in charge of their health (as well as all the other things you talk about), it has the most profound effect on them. So, a critical part of my job is to work with people to (at their own pace) support them to develop that sense of control.
    But all of the above makes me feel paternalistic…in a sense I am dictating the purpose of the time we spend together, though my training tells me that I am supporting people on a journey of ‘guided discovery’.

    Help me out- am I being paternalistic?

    A

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    1. Short answer to “are you being paternalistic”…if I understand why you would raise this question in this fashion…is, in my mind, “no.” I conceptualize it this way: For many decades here in the U.S. people seeking medical care were seen by GPs. These doctors were privileged to have the opportunity to “see” the whole person, overtime. Then the medical profession moved into specialized areas in order to reflect the increased amount of medical knowledge available. To every action there is an equal but opposite reaction, right? Well, where we are today is due in part to that swing of the pendulum. However, that isn’t the whole story. Delivery of medical services had to evolve to meet the needs of a much more mobile society. The very scope of diagnostics & treatment hasn’t just evolved, it has changed at a pace that is very difficult for the human mind to keep track of. The advent of computer processing of information has created a gulf that is challenging to transcend. So back to the question at hand – which in general terms has to do with who is/should be represented in the medical services equation. The Consumer of today must take responsibility for continuity of care alongside the attending Physician. The System…the system must provide the opportunity for that relationship to succeed. I would say that of those three components, the System is the sticking point. It has become politicized as the roles of insurance & drug companies have jumped the tracks, as it were. As ALT wrote: ‘What is true at last will tell, few at first will place thee well. Some too high will have thee shine, some too low – no fault of thine. Do thine own and work thy will.’ Do your part as a Clinician, and we patients/consumers/users (whatever the PC term is) must remember the cardinal rule for contracting any business of life: Let the Buyer beware. (I say that with a huge grin…but also in total seriousness.)

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  4. I’m a GP, nearly retired, and I wholeheartedly agree with your vision David. I’m doing all I can to promote shared decision making and patient-centred and patient-led care. But that’s also made me aware of what a challenging task it is.

    I think all your points are good, but some assume that most people will be focussed on their role as patient and be willing to be proactive. Under (3) I find it’s easy to get too focussed on technological fixes which may not be usable by many of the neediest. I think this will need to be a long process of finding out what works best for each individual. Traditional models of care delivery are likely to dominate for many decades to come, because they have not evolved the way they are without good reason. They need constant cycles of improvement that are patient-driven. I see that as the central challenge.

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  5. Hello David

    I have followed one of your Twitter accounts with interest as you know, but when I read this I was struck by the clarity of your evolving ideas. I concur with all ten points in the manifesto.

    My interests are understanding the relationship between health professionals and patients and carers when it comes to commissioning and leading health and social care services. As a research student I am hoping to look at the process to try and capture/explain what works to foster that trust in one another for co-commissioning and leading. The idea is that this can then inform the education and training of healthcare staff (your point 6).

    I am still planning how I am going to do this so will not be collecting any data just yet. It would be great if I could get some answers that added weight to why it is important to continue in this way.

    Debbie

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  6. Hi David this is an excellent framework which is very clear and should be posted on the wall in every NHS setting and research office! I like the fact you have included research in point 5 too.

    From a very personal perspective, it can be exhausting be as a patient/carer trying to stay in charge and exercise informed patient choice! I feel frustrated that even though I am educated about the patient choice agenda it is still an uphill challenge. Last time I saw my GP I was informed that patient choice was not available – unfortunately this left me speechless on that occasion! Today the appointment is about my teenage son and I am steeling myself to communicate better to make sure he can exercise the choice he is legally entitled to about where he has his treatment – let’s see if I succeed this time! I spent yesterday evening preparing and not just bringing myself up to speed with information but practicing what I would say if told again there is no choice. This time I think I will employ the approach I learned as a nurse in the old days – ‘let the doctor think it is his idea’!

    Maybe you need to add another point about future patients will be confident that their experience and opinion counts? I would like to see social care included to ensure joined up from patient/carer perspective.

    Tracey

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  7. Brilliant, bloody brilliant! So good it had attracted great comments. So hope you are going to Future of Health conference so this can be widely shared.

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  8. I don’t know where to start!
    Firstly thank you
    Next well done for clarity of execution
    Could each of the political parties agree to this manifesto?
    To put it in policy terms we’re so busy trying to fix the supply side we forget about the demand side. How do we get this into Citizenship at schools and into everyday consumer behaviours (as others sectors have done)? Can Junior docs, amongst others, save the day?

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  9. A patient-centric healthcare system is essential in the 21stC. But let us remember too those who cannot manage on their own and build a patient/carer/provider orientated health service that looks after people –
    feeds them in hospital (malnutrition is still an issue),
    cares for them in care homes (too many reports of inadequate provision of care in residential homes),
    does much more to care for them while they are at home (it more cost effective to keep the vulnerable in their own home as long as possible).
    AND: let us as patients/carers lobby for:
    adequate nursing levels on wards,
    fully integrated h/c services,
    24/7 consultant-led secondary care
    24/7 GP access
    a safe environment for ‘whistle-blowers’ – so that our interests are protected.
    These lists could go on… any discussion is important, and any initiative that improves patient outcomes is to be lauded… Thanks, David

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  10. Hi Mark
    Just a patient rep on various Groups. This issue has been around for years – and nobody does anything. There are lots of reasons – not least because of under-manning on the wards, and over-training of nurses and under-training of care assistants!!! Or is that tooooo controvertial?

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  11. Thanks for these thoughts David – the points would be a good set of prompts for council scrutiny when seeking assurance about how commissioniers and providers are developing future services locally. How would people decide whether the points in the manifesto are being delivered? I raise this only with the desire to develop its practical impact

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  12. This is fantastic – clear, inspiring and written in a way that it should be accessible to all – patient, service user, carer, GP, consultant, nurse, therapist, social worker… … Oh, and NHS managers (like me)… … And maybe even politicians!!

    John

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  13. Ditto to Mark Duman’s comment ‘hear, hear’. There appears to me a growing body of patient leaders emerging across the country who are indeed informed patients who appear to have a real sense of control over their own health and care. This is only to be applauded and I recognise from a professional perspective how difficult some of your journey’s will have been. I also recognised the courage and determination it often takes to be listened to and taken seriously. I continue to be inspired by the narratives I hear from patient leaders, Michael Seres being an amazing example, Mark Duman also. I work with a colleague in the NHS who 5 years ago challenged a Consultant who had just drawn on the area of his foot he intended to amputate the following day. The Consultant was explaining the procedure to a fellow health professional, never once making eye contact with the patient (my friend) who was lying in the bed. As he went to walk away from the bed, my friend engaged him and asked if he thought that he might have an opinion as the person who was about to have his foot amputated? The Consultant was most perplexed to be approached in such a way by his patient. The patient asked for a discussion about his options, the Consultant huffed and said there were no options. The patient disagreed and asked if the antibiotics which were being administer intraveniously could be a solution. The Consultant responded by saying ‘what does it matter, if not tomorrow, I will probably be amputating your foot one day’. The patient insisted that the antibiotic dosage be increased and he would take his chances. I’m pleased to say, 5 years later the patient still has both feet. What saddens me is how many patients remain passive and still believe ‘Doctor knows best’. Apart from the personal impact on a patient who has a limb amputated, the ongoing cost to the NHS is huge and the cost to the economy also huge when the patients employment opportunities are impacted as a result.

    Let’s turn up the volume of the patient voice, let’s foster and build this social movement for change and continue to be supportive of each other and our collective vision of a truly patient centred health and social care system.

    See @ChangeChampsNOE

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  14. Fantastic – Patient-led health care is a different model of medicine and won’t come about simply by tinkering with the current one. The principles voiced here are a clear indication of the shift needed.
    The greatest barriers to patient led innovations are not lack of ideas or energy, nor even, I hesitate to say, resources, but a fear by NHS managers of political interference and rebuke for not getting it right first time coupled with a false belief that ‘we are already doing it’; neither of which is good starting point for change. Beverage’s committee had three founding principles for the NHS, your ten look to me to be good ones for reforming it.

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    1. Thank you for those generous comments. I am sure this could be a useful vision for the future. But as with so many decent patient-led ideas, I’ve had little formal acknowledgement that they will help. We just carry on plodding away 🙂

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  15. There’s a poem about doctors by WH Auden every doctor should read
    http://www.poemhunter.com/poem/give-me-a-doctor-2/

    Having read your blog I adapted it:

    The Patient Rap

    The Model of Medicine that I’m after has a bit less gloom and a lot more laughter,
    Rather more nurses, a few less hearses, and not so many people watching the purses.
    I don’t want to be a target that you’ve got to hit, nor a statistic that doesn’t quite fit.
    I want to be a person, not a patient, especially as I become more ancient.

    There’ll be no treatment decisions unless I agree
    And, because most of that treatment is delivered by me,
    I want a bit less of you and a bit more of we.
    I want the best but not necessarily the priciest, just the one the evidence shows is NICiEst.
    I want all the facts, including the grisly bit, and then some help understanding the pros and cons of it.

    I don’t want to be special, just an equal
    And would prefer to avoid a long, long sequel
    Of unnecessary encounters with different people.
    I can share information with anyone who needs it, but I’m part of that network not just the one who feeds it: in fact I’d rather lead it.

    And speaking of data and feedback and stuff, I’ve got plenty to give, including enough is enough.
    On which point, I know I’m not immortal, so when it comes to approaching the final portal, I’d quite like some compassion, even if it’s out of the fashion.

    (With apologies to WH Auden 1907 -1973)

    AR
    March 1 2015

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