Valuing Patients in Digital Health!

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The following post is a slightly adapted version of a presentation given at the Royal Society for Medicine ‘Recent Developments in Digital Health’ event on 25 February 2016.

The purpose of the presentation was to explore digital health is at its best; when patients are not the problem but part of co-creating the solution.

The full set of slides are available here Digital Health You can also find out more about the whole event by searching the hashtag #rsmrdh16 on twitter.

Hello my name is Roz. I believe ‘patients’ are the most under-valued resource in healthcare. Using my own personal story and findings of my work with people living with long term physical and mental health conditions including co-creating a digital well-being hub called Sheffield Flourish. I hope to convince you that when digital health is at its best patients/people are not the problem they are part of co-creating the solution.

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, a social enterprise which supports people living with mental health conditions to discover and make the most of their own talents and ideas as part of their recovery journey. I run my own business We Love Life which delivers a range of projects exploring the combined potential of community and digital to improve lives. I have also recently become a Non-Executive Director for Patient Opinion – yet another Sheffield based digital health social enterprise.

I also am one of 400,000 people in this country who lives with type 1 diabetes and I purposefully put time and energy offline and online into contributing voluntarily as an active citizen to improving health care.

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. This is relevant to today for two reasons – 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 contribute to improving healthcare.

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 and signing up to Diasend – two helpful digital health innovations.

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 find it helpful when restaurants publish the carb values of their menus online.

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. They now use Diasend to help with the consultation. 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  An endurance test with no holidays.

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 really affects my ability to self-manage and to use all these tools well is my physiological, mental, social and emotional well-being.

Shelter, warmth, food, income, sense of self-worth and self-efficacy and belonging, knowledge, social networks, close supportive relationships all fundamentally affect my ability to self manage my condition. 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 self management, health and well-being outcomes

So how does digital help with the social determinants of health?

Being online in the first place means I am £1,000 a year better off!

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 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.

I am personally a huge advocate for using digital resources as an enabler to achieve better self-management and well-being but through both my own experience and through my work at Recovery Enterprises and We Love Life I have also learnt about the challenges and barriers to getting the best out of digital resources to help people to self-manage and live well.

Many digital health resources are trying to solve the wrong problem and have been developed primarily with power and profit intentions. Patients often don’t want, don’t like or don’t trust them. There are 1,100 apps for people with diabetes – most are single focused and hard work, boring and non-intuitive to use. 14 app publishers have 65% of the market share.

One of the key findings in the work we did for Sheffield Flourish to explore what gets in the way of people using digital resources as part of recovery was that there is so much out there it is difficult to make sense of the choices and has become overwhelming for many. Even when people find the tools they don’t know how to judge what is good quality and safe and which one could be most useful for them.  Many people worry about privacy, security and big brother.

One clinician interviewee for my MBA dissertation (which was on how digital health start ups engage with the NHS) talked about the digital health market being like the ‘wild west’. How do people – patients and clinicians make decisions about which digital resources to use? Is it down to great marketing or the greatest impact?

The business models for digital health is challenging in a country where we are not used to paying for healthcare at the point of contact and in a market which is dominated by the NHS with its complicated web of organisations, culture, values and interests. A year’s supply of Freestyle Libre cost £1,434.85 – I had to buy my own – not everyone has this choice. This creates an inequality gap and asks difficult philosophical and political questions.

During our research for Sheffield Flourish and in other work I have been involved in digital inclusion and digital literacy in both patients and health care professionals has been raised as an issue. 12.6 million people lack basic digital skills These people are more likely to be on low incomes, elderly and uneducated and there is a cross over with the people most likely to be living with long term conditions. If we are going to get the best out of digital health resources we will need to address these issues.

Martha Lane Fox wrote in her recent recommendations to the NHS: ‘It is critical that NHS front line staff have the confidence and skills to introduce people to new digital services and tools, motivate them to use them and support them to do so’.

The only time I have ever been directed to use digital resources by a health care professional was by a GP who referred me without any support or direction to the Sheffield Aches and Pains website so I could self assess and manage my chronic back pain.

Other access and engagement barriers such as language and culture are also prevalent across generic non-specific digital resources.

How do we overcome these challenges? Here are some emerging ideas from our work co- creating Sheffield Flourish

SF1.jpgSheffield Flourish seeks to address many of these issues by ensuring one magic catalytic ingredient is added into the recipe for developing digital resources; people and community building.

Sheffield Flourish arose from discussions across the recovery enterprises community about the need to have a ‘well-being’ hub for people to connect, share and grow in many different ways as part of their recovery. Human Studio, a globally successful digital design agency and the University of Sheffield joined in and the conversation steered towards the idea of a virtual hub designed to support and enhance real life activities across Sheffield.

Our key principles are that Sheffield Flourish is co-created by the community it is designed to serve. That digital is an enabler to real life not the end itself. That we will tackle digital inclusion so we do not compound inequality. That what we produce together will be beautiful, aspirational but will not disguise the real challenges and difficulties of living with mental health conditions. That we will 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 will seek to reach people and communities often excluded from services and digital resources.

We started with people talking about what they 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, therapy and ‘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 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 or the Zero Budget film competition in Burngreave or Ted Talks.

So people shaped the functionality plans for Sheffield Flourish right from the beginning.

We set up a steering group to guide and closely steer the developments which is made up of a majority of people living with mental health conditions with a diverse range of backgrounds and digital literacy. Each member brings a unique set of resources and insights with them in addition to their experience of living with mental health conditions from marketing to story-telling to education and training to social media. They are an amazing group of people to work alongside. Already they have tested the brief against user personas and worked with Human to agree the holding page and designs and begun to champion and spread the word about Sheffield Flourish. We already have over 100 of people signed up to our holding page with very little promotion. 25% of these people have completed a detailed user feedback questionnaire.

We have also recently recruited a team of talented volunteer Creative Content Producers who will go out into their communities and find inspiring stories of people’s experience of living with mental health and of formal and informal activities which are happening in our city which might help people with their recovery. This process is already beginning to build the connections and community fabric which will make Sheffield Flourish a success.

Next we are going to be recruiting and training a team of Sheffield Flourish Ambassadors who will go out into wards, waiting rooms and community venues to help people (including health care professionals) to go online and use Sheffield Flourish and other supporting digital resources.

We are also working on a number of related projects which will result in content for the site including pilot led by people with mental health conditions developing online training around self-compassion primarily for NHS staff!

We are due to launch Sheffield Flourish publically in early Summer with a number of taster stories emerging between now and then!

I hope that what has emerged from my presentation are the following three key messages:

  1. Start with what people need to live well/self-manage
  2. Digital is a means not the end
  3. Co-creating digital health is key to success

Finally the most important thing I have learnt which I would like to leave you with is that when people are valued amazing things happen!

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Would love to hear more about other digital health resources which have been genuinely co-created with patients/people! Please do share!

Here are a few great relevant innovations, organisations and people….

 

 

 

 

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