Power to the people: Ebola – hacking social cohesion

The ever-widening circles of Ebola have us all on the run. Most of us ricochet between apocalyptic fear and an embarrassed, profound thankfulness that, yes, me and mine are Western, Northern, Safe.

There are the practicalities of course – doing everything we can in West Africa, supporting Public Health England, understanding our potential role in sporadic, random outbreaks here.

But that’s pretty much it, isn’t it? Except, of course, for that gnawing, inner fear. To talk about how we might react or focus on our own, apparently trivial anxieties, seems, as André Carrilho’s cartoon implies, a betrayal of those who are suffering so much.

In place of fear

But you don’t have to buy the whole apocalyptic piece to agree that Ebola has the potential to take a machete to the social cohesion that underpins the NHS.

People will be afraid, worried about their own care, angry at their helplessness in the face of busier A&E departments, stressed staff, and longer waits. Is there anything we could – should – be doing right now to prepare our communities for these fears?  

When does adversity drive people together rather than pull them apart? What tips us towards the give rather than the take? Faced with severe and disruptive threats can we use the amplification of social platforms to reinforce community, not hatred? In short is it possible, Judo-like, to use Ebola to hack social cohesion?

Cohesion in disruptive times

Social cohesion is a network property. It is the sum total of all those ‘what do I feel about you’ and ‘what you feel about me’s.

Cohesion belongs to you and me, not to the elites. It cannot be commanded by ‘them’ – indeed when ‘they’ start banging on about it, it’s time to head for the exits. So it’s plausible that social platforms might indeed have some useful new tools to help us get through disruptive times.

And you can indeed see impressive, entirely new emergent phenomena emerging helping to bind communities together in many recent social or environmental crises.

Post-election violence in Kenya generated Ushahidi which was also subsequently used to hack maps to the mobiles of rescue workers in Port-au-Prince after the Haiti earthquake.

Typically these new tools emerge round sudden, clear cut, bleeding-edge crises and are built quickly by tech-savvy communities who use the very low barriers to entry characteristic of web-based tools to hack something quick, dirty and effective.

Katrina-type platforms are autonomous but, critically, are loosely coupled with the official wielders of power and money to make both more effective.

New disease, new ideas  

Ebola clearly fits this pattern and there are already efforts underway to build this kind of citizen-focused platform for mobile phone users in West Africa. But what about us?

Let’s assume that the dominant ‘don’t worry’ media narrative proves correct and posit that by late 2015 the UK is faced by continuous, modestly increasing sporadic Ebola infections, each cluster in a different health economy, each one contained.

Let’s imagine a motivated tech savvy community that knows the NHS intimately. That’s right I’m talking about the NHS informatics community. What could they build? (I’m presuming that this would have to be in their spare time; no hope of getting this done in company time is there Mr Stevens?)

Or what about the boys and girls down at Shoreditch start-ups? Or, better still, what if both communities hacked this problem together? What might they come up with?

The need for independent information channels will be intense in any significant Ebola situation. The trusty old NHS will get so far and its mega-messages will be important. But social media will be replete with rumour, misinformation and paranoia.

On the ground, there will be stories of dedication and heroism, of anger, of panic, of disruption to normal service and of people waiting longer for their hernia repair and their colectomy as target waiting times go out of the window.

It is worth thinking how independent platforms like Patient Opinion could contribute here: not just as a place for stories of how the NHS is coping but a place for real conversations between patients and the frontline about how and why all kinds of issues are being addressed on a locality by locality basis.

Being able to mirror the whole range of issues that patients fear, to answer their questions about their hospital and to fit all this together with their own stories of day-to-day care will be an important way for communities to sense how they are really doing.

And since it is essential that stressed staff feel supported, not attacked, the independent, loosely-coupled of such not-for-profit platforms could be a great place to start from. Especially if these balanced streams of stories are fed into other channels such as the BBC News.  

Quick, dirty and local 

Local clinicians with a knack for explaining issues in local terms may have a key role. Trusts and clinical commissioning groups may find that quick and dirty ‘vox pop’ channels are highly effective ways for their clinicians to explain what is happening.

These local faces will command much more trust than Simon Stevens (the chief executive of NHS England, whose Five Year Forward View plan for the future of the NHS received a cautious welcome from the NHS last week, but outright scepticism from the many online communities that patrol ‘privatisation’ or the closure of well-loved local hospitals).

Platforms like Miituu which are easy to use from any smart device and allow more control than YouTube or Vimeo may be useful here.

Any Ebola-like situation induces a sense of helplessness that contributes to social breakdown. In the US, president Barack Obama is already supporting the digital community to come up with innovative new tools to help citizens in West Africa cope better with the epidemic.

Potential tools that could be hacked together quickly might include:

• ‘The Community Salutes’: a scalable site that enables each community to display the stories, ‘thank you’s and tales of heroism and dedication occurring in your own health economy.
• ‘Defer My Care’: a way for people who are on the waiting list for treatment to delay their own care to reinforce social solidarity and system capacity whilst ensuring the system has not forgotten them.
• ‘Don’t Forget Them’ a site that helps and celebrates friends and neighbours for connecting up with the vulnerable at a time when they are likely to feel even more alone.

Useful anytime  

Of course, such tools would be a boon under many circumstances. Indeed, many prototypes for this kind of app already exist or could be repurposed.

Let us hope that we contain Ebola – and focus all our efforts on doing this in West Africa. But let us also recognise that there are things that we can and should be doing here to increase the strength of communities and that these would be useful in their own right.

Along the way, they may also prove useful tools should the battle with Ebola come closer to home.

Disclaimer: As the founder of Patient Opinion I have a personal interest in the site, what it does, and the role it plays, but am speaking in a personal capacity only.

Paul Hodgkin

Paul Hodgkin is founder and chair of Patient Opinion, a website on which patients, service users, carers and staff can share their stories of care across the UK. Patient Opinion is a not-for-profit social enterprise based in Sheffield.

Until 2011, Paul also worked as a GP and has published widely including in the BMJ, British Journal of General Practice and the Guardian and the Independent. Follow him on Twitter @paulhodgkin.