Can medicine be participatory? What can the real impact of patient’s voice be regarding treatments, clinical trials and other domains traditionally belonging to a highly specialised science? Is participatory medicine limited to e-patient’s influence, like David DeBronkhart, which is very powerful, but at the end another form to create opinion? Or to the contrary is it able to change medical, healthcare and pharmaceutical practice based on patient experience and a scientific evidence basis?

Recently the Institute for Patient Experience worked out an interesting participatory medicine workshop together with the Hospital “Puerta del Sur » (belonging to the HM Group) and the patient association “Stop Stroke”. The session proved that patients and families, physicians, mutual insurance companies, workers, nurses, prevention insurance companies and employers can perfectly develop serious prevention measured to avoid stroke at the workplace and improve in a very qualified way action protocols. That this was not an isolated case is proven by the growing success of participatory medicine initiatives. About this experience with stroke and similar ones in Spain and Portugal we will write more in the next post.

But why is participatory medicine growing right now?
As Spain’s leading healthcare journalist Irene Tato explains in her blog “Healthcare and Communication”,  the popularity of participatory medicine comes together with the internet’s popularity and the possibilities it offers to on line patient communities regarding influence, pressure and funding. This is why participatory medicine is wrongly associated with the concept of e-patients. True that e-patients are key for participatory medicine, but we would have a very narrow point of view if we only considered the on line power and not patient’s ability to  co-create. Co-work and co-develop on matters like clinical results, treatment design, reducing medical errors and healthcare costs.

The Society for Participatory Medicine defines the discipline as follows: “Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care...”

What this academic definition means is well showed in following video by Dr Daniel Z. Sands from Harvard Medical School who gives good practical examples.

Participatory medicine relies much on participatory action research, community healthcare, participatory healthcare and anthropology of health.

A growing trend
Participatory medicine is still a minority tendency within medicine as following search in Pubmed shows. The first articles appeared in the 70s, a time of utopia where participatory methodologies jumped from third world development projects to IT projects (origin of the present collaborative culture, co-creation and design thinking) and with less success to other fields like education or medicine. But from 2008 on the number of participatory medicine articles crosses the frontier of 100 per year until the 310 of 2010.

This number is still very low compared for instance with the 17.000 about stroke published 2014 or the 130.000 about oncology. But the fact is that the amount has multiplied by 4,5 in 10 years. First, as we have seen, due to the power of the internet and the impact of e-patient communities. Second because of the success of design thinking in the past years. Design thinking means to understand user context, co-design, prototype and test with them. We have already spoken in previous posts the great results obtained for example at Toronto’s Bridgepoint hospital. Yet, everything that can be achieved through design thinking and co-creation would have almost no chance to become true if there was not a very powerful trend towards the humanization of medicine.

Future is participatory
Participatory medicine is as a discipline still a drop in the sea of medical science and healthcare organization, but humanization is a global tendency. Healthcare authorities from several countries work already in this direction. There is no humanization without listening to patients and there is no true listening sin real engagement: future is participatory

We close with a beautiful video by Professor Bas de Bloem at TEDxMaastricht. This video is heart touching and when you watch it you will understand why future will be participative or it will not be at all.