Evidence Based Activism
In the last few months, we have seen a constant stream of digital health tools for individual self-tracking. In light of the rhetoric that hails self-monitoring as the ultimate avenue towards patient empowerment, the efforts of patients and carer groups to generate collective bodies of clinical knowledge, can seem against the zeitgeist.
Patient groups are, however, challenging the well established division between scientific and lay knowledge and shifting the power between patients and clinicians in a far more radical way than health tracking devices claim to be doing. Successful patient organisations are extremely effective in exploiting the potential of the internet to research, network, and share knowledge, in order to pursue the search for treatments.
Patient groups are engaging with knowledge in a way that is increasingly complex and sophisticated. These citizen organisations are creating registers of patients, collecting experiences and cases, organising conferences, analysing and comparing journal literature, framing and orienting research questions. In other words, patient groups are taking a major role in the elaboration of medical and scientific knowledge. These communities do not want to simply passively provide data for medical research, they are actively participating in generating their own domain of knowledge.
Last week at Nesta’s event on Evidence Based Activism, Nick Sireau, Madeleine Akrich and Vololona Rabeharisoa gave vivid examples of the way patient organisations in France and the UK are embracing knowledge as a form of activism.
These organisations have stood up to the challenge of providing solid evidence to funding bodies, pharmaceutical companies, policy makers, clinicians and health services, in order to obtain support for advancing treatment for their condition. Nick Sireau described how the AKU Society (a patient-led group for the debilitating genetic disease alkaptonuria) has in the last ten years, made a business case to the NHS on the cost of AKU patients, created an international registers of patients, analysed scientific literature, funded researchers, instigated and supported animal trials, and launched clinical trials in three sites in Europe. In each instance, they had to bring compelling scientific evidence to the different institutions they were involving. Akrich and Rabeharisoa discussed how in France, parents of children with ADHD or with 22q11.2 deletion syndrome (a disorder caused by a microdeletion on chromosome 22) brought evidence from medical literature in other disciplines to obtain recognition and treatment for their children.
While having to embrace the language and framework of clinical and scientific disciplines, patient groups are also contributing to requalify the relevance of the data they are bringing to the medical debate. Experiential knowledge, the daily experience of living with a condition, is being assembled and included alongside biomedical data. This type of “lay” knowledge is increasingly acquiring value and is being recognized as a precious asset to understand the effect of treatments, support diagnoses, and provide longitudinal data.
Madeleine Akrich mentioned how a recent French study showed that the quality of clinical research papers had been significantly higher when patient groups had been involved in the process. On the other hand, some online platforms which connect patients and allow them to share their medical data, are also leveraging the value of experiential information by selling the information to pharmaceutical companies.
If evidence is the playing field, patient groups are in the game bringing the collective intelligence of their members along with them.