21st Century Patient-Centred Care: A digital citizenship contribution

Before we embark on this new era of healthcare, are we clear about our shared purpose, the end goal of co-creating 21st Century Patient Centred Care? Often we get stuck on building process and infrastructure and forget the real prize is to improve health and well-being outcomes for patients/citizens and communities/populations who live within the context of our healthcare system.

Traditionally we have used the WHO definition of individual health:

A state of complete physical, psychological and social wellbeing, not merely the absence of disease’

Yet we have learnt that our connections and our context are hugely relevant as an individual and as a member of our community. We could look to expand and update our definition, perhaps lending from the Aboriginal definition of health:

‘Health is… not just the physical well-being of an individual but refers to the social, emotional and cultural well-being of the whole Community in which each individual is able to achieve their full potential as a human being thereby bringing about the total well-being of their Community. It is a whole of life view and includes the cyclical concept of life-death-life.’                                                                                                                               

In developing a future healthcare system we need to understand the stakeholders. We need to be clear and honest about what are the different stakeholders current and desired levels of power and interests, legitimacy and sense of urgency. North Staffs was an example where patients had high levels of interests and a sense of urgency but low levels of power and perceived legitimacy. Fundamentally, we need to focus on increasing both power and legitimacy of patients and citizens in the context of healthcare if we are to create authentic empowering conditions at an individual, community and society wide level.

A focus on prevention should be incorporated into a 21st century patient-centred care, it is clearly better for health and for healthcare services if people are able to avoid or minimise the risks of getting long term conditions in the first place.

It is widely acknowledged that the NHS at all levels including in general practice and in foundation trusts should not be operating in a silo and therefore 21st century patient centred care will need to be integrated, involving all stakeholders in healthcare, especially if considering the impact on health of the social determinants of health, e.g. housing, education and employment as evidenced by Marmot. 

No two individuals, communities, or localities are the same, each has a unique set circumstances, stakeholders, assets, networks and relationships. One size will never fit all, we need a system which is flexible and customisable and it is important to remember that because we are dealing with humans building relationships with other humans, the process of development of a solution will always be part of the solution.

In my personal experience as someone living with type 1 diabetes for over 16 years and in my professional life as someone who has worked with communities developing well-being solutions for the same period I have learnt that the foundation for maximising our potential to live well whatever health conditions we live with relates to our feeling of empowerment. Using Self-efficacy and Salutogenisis theory, this is our sense of feeling of coherence and control over the events in our life.

During my time as Director of Altogether Better, we developed the Community Health Champion model deliberately working at scale and within an evaluation and monitoring framework. The evidence we commissioned was not RCT gold standard due to the nature of the research and resources but it we were able to build new evidence around the SROI and impact of ‘empowerment’ approaches. The Community Health Champions approach is a strength based and peer support approach which uses a set of principles which are also used to varying degrees by other approaches such as Asset Based Community Development, Patient Leaders, Expert Patients etc. We have no shortage of good practice examples in this country for each locality/general practice to draw upon – see diagram below.

We learnt that there are a number of factors to achieving this change which I think could be taken up as principles of 21st century patient/person-centred care:

  • The process of development of a new approach and culture is as important as the end product or service because this is about changing how humans interact and relate to each other. This means an approach no matter how successful cannot be simply dropped onto another community, no shortcuts!
  • Improving the level of knowledge of a patient is a key factor in creating empowering conditions but attention must be specifically paid to health literacy and accessibility of information. System broadcasting does not work. Working with champions or early adopters in communities to spread information or supporting patient led initiatives such as digital platforms may be more effective. There is some interesting relevant insights in this Health Literacy research paper
  • Improving connections and social capital in communities and building networks of networks is essential to reduce isolation, unleash sometimes latent assets and synergise efforts and resources. There is stacks of evidence to show the value of feeling connected and the impact on health of feeling isolated and alone including this paper on the link between long term conditions and social networks.
  • Focus on increasing sense of purpose and value and feeling confident. When people feel valued, amazing things happen. Feeling valued and confident in managing a condition, choosing healthier lifestyles and seeking out new information is key to improving resilience and well-being.

During a secondment at NHS England I carried out a piece of research which included a thematic analysis of over 50 publications This resulted in the ‘principles of participation’ which was incorporated into the guidance for CCG’s in delivering their legal duty of involvement. It has since been developed into a bitesize booklet. The understanding and application principles are essential in developing authentic patient-centred care.

Finally, we have an incredible tool which is currently undervalued and underused: digital health. There is a lack of understanding of the definition and scope of digital health in the NHS so I used my MBA dissertation research study to develop one based on the concept of the NHS adopted ‘house of care’.

‘Digital health comprises of new technologies, informatics, geonomics brought together with healthcare for the purpose of co-creating the conditions for empowered patients, integrated person-centred healthcare services, informed commissioning and efficient and effective organisational processes.’

The diagram below shows the current picture of digital health as a ring around the house of care. The potential of digital health is immense and largely untapped from a citizenship perspective, e.g. access to electronic health records, prescribed or referrals to self-tracking devices or peer support via social media and community platforms. See Maneesh Juneja for a digital health futurist view or Dr Amir Hannan’s site for a GP leading the way in using digital to support patients to feel in control or Michael Seres blog for an example of an experienced patient using digital to access care and live well.

The diagram below presents a vision of patient-centred care with the house of care in the centre surrounded and supported by a ring of digital health tools and connected to citizens/patients and communities by a ring of citizenship approaches.

There is incredible potential to co-create 21st century patient-centred care unleashing these two plentiful sets of tools, assets and resources. I feel really optimistic about the future because we already know how to do this, we have the tools, the models, some of the evidence and many amazing people (patients, clinicians, digital folk and others) with the skills, experience, commitment, and most importantly, shared values, to make this happen!

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21st Century Patient Centred Care: Digital Citizenship

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#EMpowering Information in Health

Have just arrived home after three days of very different events in very different contexts but all with the same big message!

The first day, I was at the #developingNHSCBcitizenvoice event held by the NHSCommissioning Board for around 200 third sector organisations with an interest in citizen/patient/public voice. We heard an inspirational vision of an NHS that is led by principles of transparency, participation and collaboration from Tim Kelsey @tkelsey1 and Ciaran Devan (Nat Director and Non Exec Director/Macmillan on the NHSCB). Not to forget some excellent challenges and debate from Paul Farmer (MIND) and many more.

The second day, I was working with a small group of great people linked to South West Yorkshire Partnership Foundation Trust http://www.southwestyorkshire.nhs.uk/ on the co-production of an innovative approach to working with citizens to help patients navigate the health system linked to telehealth and other technologies.

And on the third day…. I was with 1000,s of ‘Executives’ mainly in and around the NHS at #confed2012

At all three events, voiced by many, were the following key messages:

  • The NHS is running out of time, we have one last chance to preserve what we all find precious about it, i.e. that it is relatively high quality, full of innovations, has a strong ethic behind it and is free at the point of contact. We have to face up to the pressures of growing demand, a different not patient, competent consumer and a very challenging financial and global climate. Paul Hodgkin http://www.patientopinion.org.uk/ talked of the immient Eurozone crisis and how this could hit our healthsystem, citizens and society hard compounding the difficult decisions and conflicts which already exist. Mike Farrar @farrarmike of the NHSConfed spoke of the NHS being a supertanker heading for an iceberg.
  • Citizens are part of the solution not simply passive consumers of health. The settlement between citizens and the health system, competent consumers and health professionals needs to change and become fit for the 21st century. Sophia Christie has written an excellent publication with the NHS Confederation which articulates why there needs to be a new relationshiphttp://www.nhsconfed.org/Publications/Documents/Personal_experiences_280212.pdf. Altogether Better www.altogetherbetter.org.uk have also written a joint publication with the NHS Confederation which shows just how that has been done at a community level through the Community Health Champions Model. http://bit.ly/NBPBXL

Bringing all three of these messages together Information and technology is a huge gift to the NHS that we need to embrace, not as the end output, but as the rich tool for achieving great things within health. However, there is one huge caveat, citizens must be mobilised and engaged in the developments or it will, at least, be a missed opportunity and, at worst, be a failure and waste of resource.

The best case scenario from my perspective would be that we brought active citizenship as an equal partner into information and technology developments. This could mean:

  • people to be involved in co-producing new assisted technology
  • volunteers in community be involved in marketing and supporting members of their community to use telehealth/care services
  • the conditions be created for new social networking opportunities which connects citizens with each other and the health system
  • that collaborative clinical technologies involved the patients they are being developed to help support
  • and most importantly to me that health’ communities are supported to build social capital, relationships with each other to ensure that technology does not exacerbate inequalities and increase isolation and the well known health challenges that these outcomes would bring.

All in all, an inspiring few days, although I really, really hope that this time next year all three of these gatherings have created the conditions where active citizens in health are able to join the discussions and tell their own stories.

On that note Lisa, an amazing Community Health Champion did go along to the first event (although was one of few and has actually recently got a job supporting new Champs- congratulations Lisa). I know Lisa so had already heard her story up to the point where she became a volunteer CHC after her GP connected her a the local community organisation. Three years ago she used to self harm regularly (see http://understandingdifference.blogspot.co.uk/2011/05/altogether-better.html for that part of the story) but what she told me this week was that she has a job, her self help group have been commissioned to replicate 8 times, actually the ‘systems’ counselling service (she was refered to and never received) now refers people to her group and she is supporting people who self harm through a social networking group reaching as far away as Singapore, oh and she worked out that she has saved the NHS £200,000!

Think that says it all! It gives me inspiration to do what I can to help create the conditions for people to have more power and control of their own health and the health system through information and technology.