Power to the people on communities of care

My great, great, great uncle Thomas Hodgkin was the pathologist who in 1832 first described what ultimately became Hodgkin’s disease.

A fierce Quaker and abolitionist, he was one of those setting out on the great voyage to understand the interior of the body. 

Thomas and the other early pathologists described things. What did this disease look like? What pre-mortem symptoms went with what post mortem changes?

Such descriptions from nature are the starting point of most disciplines; but it must have been frustrating not to understand the mechanisms causing the pathology, let alone not to have any useful therapeutic interventions.

For a visitor from that time – 180 years ago – much of today’s medicine would be indistinguishable from magic. The imaging; the therapeutics; the unfolding majesty of the genome are stunning testaments to how far Thomas’s journey into the body has come.

A golden age, but not a happy one

Reflect on this journey and it is clear that there is no nostalgia in medicine. No surgeon or patient wants to use yesterday’s technology – just ask Aysha King’s parents.

For medicine, the golden age is always now. Yet both clinicians and patients know that although this is the best of all possible times to be practicing medicine, there is still much wrong with health care.

Somehow, health care is full of honourable people trying hard to do their best in a system that, in its individually well-intentioned particulars, creates stunning amounts of waste, carelessness and disillusion.

By and large, doctors and nurses do not think this is a fantastic time to be working in health care. Patients often feel lost and uncared for. Costs rise without much change in quality. Politicians fret about affordability.

Is this all new, or are there aspects of today’s world that would be familiar to Thomas? Are there any enduring patterns that still shape of the medical encounter?

New pressures for change

Death, distress, the human processes of caring and creating our meanings through our interactions with disease; no doubt he would recognise all these well enough.  

And he would recognise too the enduring asymmetry between physician and patient – afterall only one of us is ill, only one of us lies on the operating table whilst the other holds the knife.

He would smile wryly at the politics of health care institutions – Thomas was removed by his fellow consultants at Guy’s for having the temerity to show a Native American Indian chief round the hospital.

And, as an early advocate of social insurance, he might recognise some of our dilemmas around how to fund health care, too.

As for all the new stuff, I like to think that the thing that would most excite him the most would be the egalitarian nature of today’s information.  

And as a campaigner for the abolition of slavery, I am sure he would have loved 38 Degrees and the way that sclerotic old institutions – rooted in patronage and where you went to school – are finally, slowly, yielding up their Masonic powers to the sousveillance of the social media wielding citizenry.

Creating new medical communities 

So where does all this get us? Just as with that very first pathological revolution that Thomas helped to midwife, the way that medicine is practiced is once again cracking open.

This is most obvious around the glittering technology. But the changes to the relationship between patient and clinician are in some ways just as profound.

It is not just that power and information are shared more equally. Patients are no longer alone. On the darkest of nights they can reach out and touch someone half way round the world who knows exactly what they are talking about because they too have been there.

So they come to the consultation knowing that behind them stands a community of solidarity that extends beyond their friends and family to take in the world-wide communion of all those who suffer their condition.

Right now, these communities are mostly just becoming self-aware. Sharing and mutual support is where they are mostly at.

But add in some Mumsnet and a bit of 38 Degrees and you can see that the forces shaping the interaction between clinician and patient are changing as never before.

Those who sit on the professional side of healthcare will increasingly find their patients not just to be well informed, and ‘empowered’ by the crumbs we choose to share, but committed members of these world-wide communities.

Creating the best health care has from the technology to hand has always been the task that confronts us all.

And the hardest part of this has always been shaping the social, the human, and the political systems in which medicine is embedded – just ask the team looking after Aysha King. This was so for Thomas 170 years ago and it remains so today.

Communities of patients, in control of their records, generating their own data from bio-sensors, and no longer isolated but collaborating together at scale will threaten professionals. They also represent the next great hope for reclaiming the humanity within healthcare. 

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.