It's never been easier to change the world

A good place to start in understanding the value and potential of digital citizenship in the context of health and wellbeing is to define what we mean by “active citizenship”. The term in itself provokes great debate, but the British Council has a neat definition that we can use for the purposes of this article:

“A citizen who commits his or herself to an action that benefits society.”

Some would say we have reached the tipping point in the UK healthcare system to truly recognising the value and impact of active citizenship in health and wellbeing. From community health champions to patient leaders, co-production to asset based community development, citizenship has hit the mainstream as reflected by a recent publication from NHS England: Transforming Participation in Health and Care. 

We know the value of connected, informed and confident communities. Conversely, being disconnected and lonely has a huge impact on our health, with one studyshows it is as harmful as smoking 15 cigarettes a day. Self-efficacy has a correlation with the ability to cope with adversity (eg: living with a long term condition) and health literacy is a “stronger predictor of health status than age, income, employment status, education level, race or ethnic group”.

Communications and information sharing is happening on a global scale and data is driving business and economies, including healthcare. Dr Eric Topol’s book Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care is a great introduction to this new world, and head of digital health strategy at consultancy Popper & Company Paul Sonnier’s infographics provide a comprehensive visual summary.

Great potential

Now the case for active citizenship in health is established, how can we use rapidly evolving and growing digital technology to enhance and support and spread its potential?

‘We can choose when and how much to contribute, from spreading a tweet message in a campaign to joining and getting involved in an online community’

Digital technology fundamentally provides greater choice of how and when to act. It helps people to support each other no matter where they live. We can choose when and how much to contribute, from spreading a tweet message in a campaign to joining and getting involved in an online community, there are multiple ways to make a difference.

We can choose our online persona and keep our identity private. This has been the cause of much concern for very good reason, but a good example of how this can also help people was shared by community health champion Lisa Cox, who was involved in the NHS’s 65th anniversary celebrations. She provides online support for people who self-harm as far away as Singapore and says people who anonymously connect online might not be getting help anywhere else.

Social media consultancy Symplur created a great visualisation of an example of how social media is breaking down barriers in healthcare. It says: “Traditional barriers like location, profession, demographics, physical abilities and conditions will not stop you joining in. The world is flattening.”  

We can campaign and share and spread messages quickly across the globe. You may have noticed the rise of “world days”. The internet has enhanced our ability to communicate, raise profile and promote our chosen cause. Twibbons and hashtags have played a growing role for people leading and participating in campaigns.

Look at #wspd for an excellent example with credit due to Alys Cole-King on her pioneering use of Twitter to spread the word and build support for World Suicide Prevention Day. The UK Sepsis Trust also did a fantastic job of highlighting the symptoms of sepsis on World Sepsis Day #wsd13.

‘New digital citizenship platforms are springing up ever more frequently and arguably a full range of market leaders is yet to emerge’

We can have conversations with large groups of people connected by values, purpose and common experience, find out and share information about almost anything at the click of a button or swipe of a screen and using open innovation, build and grow new ideas together.

Our Diabetes is a patient-led collaboration which uses the Twitter hashtag #ourD to encourage peer to peer conversation and support. Another example of citizens spending time and effort supporting each other is #bpd Twitter chat facilitated by Sue Sibbald, one of the online community leaders supporting and caring for her community by sharing information, making connections and facilitating conversation. Anne Cooper and Michael Seres are other online community leaders who help people in their communities all over the world.

Story sharing

Another form of citizenship has emerged through digital story telling. Following the publication of the Nuffield Trust’s The Wisdom of the Crowd, featuring health service leaders celebrating the 65th anniversary of the NHS, I felt they were missing the voice of patients and citizens so I set myself the challenge of finding 65 amazing stories of patients told through the medium of blogging.

These story sharers spend an incredible amount of time and effort sharing their stories and they are often driven by a desire to benefit society, making blogging a part of digital citizenship in health. There is a huge number of blogs out there, so it is difficult to pick out any one in particular but a few of these such as Downs Side Up, In the Blink of an Eye and I am More Than Epilepsy are well worth the read.

‘Digital technology is providing an amplifier for voices of citizens who are passionate about changing the status quo’

The last two categories are sometimes interlinked. Charity chat rooms and digital platforms provide the space where active citizens in a given community can get together to share experiences and information and encourage and support each other. Two great example of charity led chat rooms are the MS Society’s Everyday Living and the Macmillan chat rooms.

New digital citizenship platforms are springing up ever more frequently and arguably a full range of market leaders is yet to emerge, though an examples with potential include crowdhealth. There are also some sites focused on other functions but that incorporate citizenship as a support tool such as patientslikeme, Know Your Own Health and Big White Wall, which was set up as an early intervention service for people in psychological distress. This site showcases the value of digital technology, with over 75 per cent of members talking about an issue for the first time and 95 per cent of people reporting at least one improvement in their wellbeing.

People powered health

Digital technology is creating the conditions for real people powered health, providing an amplifier for voices of citizens who are passionate about changing the status quo. At its very best digital technology offers a tool to support and enhance offline activities. However, despite being a huge fan of the potential of digital technology to unite people with a common cause to join forces and make a difference, I do think there is cautionary note to add.

‘Digital citizenship in health has arrived and has huge potential to make a difference to real lives’

Beware of the potential for harm in “bad” information, trolling or targeting of vulnerable people. There are also the issues of “slacktivism” (which Unicef addressed in its “Likes don’t save lives” campaign calling for cash donations, not passive support on social networks), the digital divide and the integrity of purpose of many of the data-harvesting commercial companies.

With movement in the markets such as Google’s new health company Calico, the big pharmaceutical firms moving in and investment funding for digital health start-ups on the increase, we are likely to see more opportunities. Citizens now have more opportunity and choice over how they can contribute to society and we can reach people all over the world in our shared purpose.

We do not know if the combination of digital technology and active citizenship will be enough to build a revolution in healthcare or sweep up the mess, but digital citizenship in health has arrived and has huge potential to make a difference to real lives. 

Roz Davies is director of community engagement at Healthbeme and former director of Altogether Better