The following post is an adaption of a presentation given at the International Technology Enabled Care Conference 2016. The conference was hosted by the TSA and explored connected care, homes and communities. A white paper was launched at the conference by by Paul Burstow which stated;
‘Service users, patients and carers need to be involved in the choices being made about their technology-enabled service’
This post explores what that relationship could look like and the potential we could be releasing if we change the current reality of ‘patients’ or citizens being the most under-valued resource in health and care?
The traditional paternalistic relationship between citizens and healthcare is changing and there is a lot of talk about patients taking control. This post flips the idea of prescriptions which are usually a mechanism for an expert to authorise medical treatment to one which can be uses to share ideas for changing the power balance to one where patients are recognised as partners, experts and leaders in health and care.
This post uses real examples to explore the idea that when health and care digital technology is at its best patients/citizens are not the problem they are part of co-creating the solution
What are we trying to achieve together?
One of the most important elements of co-creation is to start with shared purpose and understanding.
When considering using digital technology as it is important to remember that it is an enabler, the means not the end and that the end is to improve health and well-being.
What does good health and well-being look like? This aboriginal definition is a good place to start…
‘…. It is not just the physical well-being of an individual but also 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….’
This definition recognises the value of physical, social, emotional and cultural well-being and that the wellbeing of people and communities are intrinsically linked. Being connected matters.
Shelter, warmth, food, income, sense of self-worth and self-efficacy and belonging, knowledge, social networks, close supportive relationships all fundamentally affect our ability to self manage our conditions and health and well-being. Maslows Hierarchy of Need,Salutogenesis, the Flourish theory, Five Ways to Well-being,Social Determinants of Health, Fair Society Healthy Lives, all provide evidence based theoretical lenses through which we can understand why it is so important to consider a person’s whole life when seeking to improve health and well-being outcome.
Patients are more than their condition/s
I am a mother of two children, I live in Sheffield and I enjoy the outdoors and photography. I have an MBA and I am a Managing Director of Recovery Enterprises and We Love Life and a Non-Executive Director of Patient Opinion – all three are Sheffield based enterprises involved in people driven digital.
I purposefully put time and energy offline and online into contributing voluntarily as an active citizen to improving health care and sit on the national type 1 diabetes research programme Dafne Plus.
I am also one of 400,000 people in this country who lives with type 1 diabetes arguably up there as one of the most complex long term conditions to self manage as a patient.
The reason I am explaining the different parts of my life to you is to highlight that every patient has a life beyond their condition/s including a unique set of talents, insights and ideas.
It is important to understand that one size does not fit all and secondly to realise that patients bring with them a whole set of resources which could be unleashed and help to improve health and well-being through technology.
Choice and Sense of Control Helps Self Management
Technology has made an enormous difference to my ability to self manage my type 1 diabetes.
I see the Specialist Diabetes Consultant once a year for 10 mins and when I am struggling I can seek help from the Diabetes Specialist Nurse. I order my repeat prescriptions of insulin and test strips online through my GP and the rest of the time I am currently ‘self managing’ my diabetes with very little contact with the NHS, 24 hours a day, 7 days a week, 52 weeks a year. An endurance test with no holidays.
I inject insulin at least 5 times a day and test between 5-10 times depending on what I am doing, e.g. if I will test more if I am driving a car, exercising, speaking at big events. I try to record as much as possible to spot and respond to any patterns. This has become much easier since getting a Freestyle Libre (a blood glucose monitoring system with sensor) and signing up to Diasend – two helpful digital health innovations which connect to help me and health care professionals work together to improve my self management.
Each time I eat I calculate the carbohydrate portion of the food I am eating. As you can imagine this is not always easy given not everything I eat comes in a neat package with labelling. However, there are many digital apps which help, I use Carbs and Cals and Cook and Count.
I also use Fitbit to motivate myself to improve my exercise and sleeping habits with varying degrees of success!
All of these things are useful tools in my kit but what also affects my ability to self-manage and to use all these tools well is my mental, social and emotional well-being. Digital health is also helping me with this aspect of my well-being.
I am able to connect with my peers, my family, friends and colleagues through social media and online forums and I can find out information about almost anything affecting my life at the touch of a button or the swipe of a screen whether this be ‘what to do when I leave my insulin on a train when I am far away from home’ or applying for a job or looking for a place to live
I also use social media to connect with others and share insights and ideas about healthcare particularly blogging and tweeting. I have used social media and tools like Patient Opinion to feedback my experiences of services. This helps me to feel useful, purposeful and valued.
Online peer support through social media has made a big difference to me. Before I engaged with this community I had met less than a handful of people living with type 1 diabetes. I remember when I was trying to make an informed decision about whether or not to have children, I got the science stuff from the diabetes consultant, read the NICE guidance but it wasn’t enough so I searched everywhere for other people’s experience and found one relevant blog. I read that blog so many times. It really helped me to think through the issues before I made the right decision for me. There is nothing that can replace the authentic and empathetic understanding that peers are able to bring.
Having access to data and information, being able to make choices, feeling a sense of control over my own destiny and being an active part of a community are all fundamental to my ability to co-create and self manage my own health and well-being.
Patients as Partners, Leaders, Experts
In the community of people living with type 1 diabetes, there are many inspiring and intelligent patient leaders who are using all their talents, insights and ideas to improve the lives of others through technology; Nightscout, T1Resources, MySugr, MumoActive, InputDiabetes to name some of the resources which have been developed by people living with T1 Diabetes.
Patients have ‘skin in the game’ and this means not only that do they have a unique expertise to offer, a deep level understanding of what they need but also are very motivated to make a difference.
This obviously applies beyond type 1 diabetes, check out Molly Watt Ltd, I-Ostom, The Pain Toolkit, IBD Relief and #BDPChat on twitter. In fact there is a whole platform designed for promoting patient driven ideas called Patient Innovation.
There is also the ‘People Driven Digital’ movement spearheaded by Mhabitat which produced a white paper last year. Look out for more from them under the hashtag #PDDigital16 and check out the PDDigital16 Festival blog post.
Recognising the value of patients as partners, leaders, experts was one of the drivers for Sheffield Flourish. I have been privileged to be involved in co-desiging this digital well-being hub which aims to help people living with mental health conditions to find the connections and resources they need to build the lives they wish to lead. We take a blended real life and online approach.
- Sheffield Flourish is co-created by the community it is designed to serve.
- We work to tackle digital inclusion so we do not compound inequality.
- Our content is aspirational and hopeful but does not disguise the real challenges and difficulties of living with mental health conditions.
- We work together in partnership with others who share our values and purposes and work to make the most of the assets and strengths of our city and community.
- The process of engagement is core to our whole approach and we actively seek to reach people and communities often excluded from services and digital resources.
We started with the question what do you need to live well?
People did not mention medication, self-trackers, telehealth/care or online patient records.
People talked about:
- feeling a sense of purpose which included employment or volunteering
- feeling in control and valued which included involvement in the improvement of services,
- social networks and peer support
- ‘dreaming and making’ which was the biggest area and included a whole range of activities from dog walking to reading/watching and listening to inspiring stories.
We also realised early on that as well as not being able to find and access online resources people had the same problem with offline resources in our city. They didn’t know about Tinder Foundation Learn my way or the computer course in Heeley or the Oasis gardening project in Fulwood or Couch to 5k on NHS Choices or the Zero Budget film competition in Burngreave or Ted Talks.
So people shaped the functionality of Sheffield Flourish right from the beginning. The Beta was launched in late July and currently includes stories and peers support, enterprise and activism, social networking and activities and events in our city.
Before we launched over 180 people had been involved in shaping Sheffield Flourish, already we have over 1,700 users – we were aiming for 300 by the end of Sept!
We also have over 40 talented volunteers from a diverse range of backgrounds all with lived experience of mental health in roles including steering group members, creative content producers, editing panel members and digital ambassadors.
Already we are beginning to get feedback on the impact of Sheffield Flourish as health care professionals begin to refer people to our site, local community organisations report new participants in their activities, and people talk about the value of contributing and feeling part of a community.
We even had a complement from as far away as Adelaide who are considering building their own flourish community!
Co-creation has a positive impact on health and well-being at every level. Actually there has been quite a bit of evidence building around related approaches over the last few years
Here is my prescription principles for patient driven digital!
- Start with shared purpose and understanding and the question ‘what matters to you’
- Understand the holistic and community context in which people live.
- Recognise that every person is unique and so much more than their condition
- Build choice, information and sense of self efficacy
- Know that patients have skin in the game which often gives them expertise and motivation to improve lives
Patients are so more than their condition, that there is great value in recognising them as partners, leaders and experts and that the best technology solutions will be those that are co-created with patients.
If we are going to develop 21st century technology, lets also use 21st century approaches. Paternalism is history, co-creation and patient-driven digital technology is the future!
Follow me on twitter at @roz_davies