Wednesday, 3 June 2015

A Social Contract?

This was the topic #socialcontract15 for an event hosted by The Academy of Medical Sciences and the British Academy for the humanities and social sciences which I was invited to attend. 

The model, first described in 2008 by Dr Elias A Zerhouni, former Director of the National Institutes of Health, USA talks about 4Ps - Predictive, Pre-emptive, Personalised and Participatory. 

I arrived, looking forward to listening and contributing to the discussion but then when a speaker was unable to attend I was invited to take their place. 

Here is the talk I hurriedly put together.

"I lost my voice, I found my voice..."

These repeated phrase comes from a work of art from Glenn Ligon, the American artist.

He is not just speaking to me, with my throat cancer experience. He is speaking for, to and with people of different races, cultures, gender and sexuality. He is inviting us to think beyond the usual subjects who are interested in their health and wellbeing. His work is rooted in exclusion and inclusion. 

So, as we explore this concept of a social contract our greatest challenge is to ensure that we do not increase the gap in inequalities. 

It is right and proper that the Academies start from the perspectives of science and medicines but I suggest that the fourth P - Participation - holds the key. 

Too many patients feel they have no voice or have lost their voice in healthcare. We assume we can misbehave, get ill and the NHS is there for us. When we visit the NHS we are told what will happen to us.

Participation is not just taking part as a guinea pig, being given information or told to behave in a certain manner. 

Participation, for me as a patient, is about a series of active, continual dialogues which helps me understand my health and wellbeing. This has led to far less visits to any doctor since I was ill.

A social contract has to be about 'change' in approach, manner and behaviours. It needs to include...

Shared decision making as a real, honest and tangible reality
Rights discussed as a part of responsibilities whilst avoiding stigmatising individuals or communities
Open talk about the costs of healthcare and benefits of prevention

More patients have access to information through the use of new technologies and social media. These factors require a shift in the ownership of health, the balance of control and power.

I work one day a week for the NIHR Clinical Research Network advising on the involvement and engagement of patients and the public. I am often struck by the number of people I meet who have become actively involved talk about having a much better understanding of their health and the challenges facing research, medicines and science. They too talk about less visits to GPs.

By being offered a voice, people are able to inform the research agenda, to influence policy and practice which has helped develop better patient outcomes, avoid duplication and campaign for speedier research and quicker application. 

The public are extremely positive and highly supportive about NHS research as it provides more opportunities to find out about their health. 

The participation is genuine, meaningful and has added value. Our challenge in any social contract is to help us all understand the gains that can be accrued.

Cancer Research UK has recently published their plan Every Patient a Research Patient. 

Let me return to the artist, Glenn Ligon. The title of his exhibition is Encounters & Collisions and I suggest that we need to reach out to Encounter and talk with patients and communities and accept that there will be Collisions. 

Maybe we should look towards all meetings with the public to be opportunities to discuss health more than ill health