Towards greater participation by patients in science

02 december 2016

Federa Societal Award goes to the James Lind Alliance

Get patients, carers and doctors together to establish research priorities. This was the mission that the James Lind Alliance (JLA) started in 2004. Meanwhile, the JLA has been identifying on more than 30 research areas a top 10 of research priorities, and thus made a major contribution to a more patient-centered focus within medical research.

Federa Chairman professor Looijenga hands over the Federa Societal Award to Steph Garfield-Birbeck, JLA manager

Federa Chairman professor Looijenga hands over the Federa Societal Award to Steph Garfield-Birbeck, JLA manager

The James Lind Alliance concretely and positively gives shape to a medical science that has more relevance for society and for patients. Therefore, the Federa, Foundation Federation of Dutch Medical Scientific Societies, handed over the Federa Societal Award 2016, to the James Lind Alliance.

Patients also set research priorities

The JLA was started by Sir Ian Chalmers in 2004. He is also one of the founders of the Cochrane Collaboration. The main instruments of the JLA are the Priority Setting Partnerships (PSPs).

          “A PSP is like a flash mob”, says Steph Garfield-Birbeck, JLA manager. 

The JLA does not initiate this flash mobs. Patient organizations or funders come to the JLA with the wish to prioritize research in their disease area. The role of JLA is to guide the process. Garfield-Birbeck: “An independent JLA facilitator makes sure everyone has an equal voice. The list of 10 priorities is the outcome. In this way, patients can inform the research community which questions needs to be answered. There, the flash mob ends.”

Has the JLA worked upon research areas that did not receive much attention of researchers?

“Yes, for example mesothelioma, which is a difficult research area because many patients die early.”

What kinds of research are found in the top 10 priorities?

“It is very broad. At first, JLA top10s fed phase III trials, but over the years a shift to more fundamental research was seen. The PSPs want more often to find a cure for a disease. At the other hand, many patients nowadays stay alive, but live with a chronic disease. A lot of questions were asked about how to live with the disease. Another trend is that questions are becoming more complex.”

In 2015 Crowe and al. showed the difference in interventions asked for in PSPs and done in registered trials.

More than 30 PSP published, 30 PSPs in process

Areas of focus of the more than sixty PSPs, include: hair loss, acne, Lyme disease, dementia and neuro-oncology.

More than thirty PSPs now have published their top 10 research priorities, for example, the PSP about urinary incontinency has led to five systematic reviews, three projects in development, and the launch of five research projects.

What makes the JLA so special for you?

Steph Garfield-Birbeck: “I like the idea of equality, of access to research, and the fact that it is an unconstrained movement. There are its methods, principles and a way you go. Not a short process, it is long, because you want to make sure as many people are involved as is possible. It also makes ultimately research happening and it feeds straight into funding of research. Some research would not have happened without the PSP, for example the role physiotherapy in asthma, or questions about accesibility of services for dementia patients.”

More sustainable medical research

The Federa believes that in addition to more patient-centered focus in research, the PSPs will result in even greater cooperation and in quicker available valuable results. The PSPs make visible the gap between the research priorities of patients and caregivers on the one hand, and current medical research on the other side. By concretely contributing to narrowing the gap, the JLA shows, how durable medical research could look like.

The nomination for the Federa Societal Award was done by the Program Committee FederaDag. The Federa Societal Award has been handed to JLA by Federa Chairman prof Leendert Looijenga at the FederaDag, November 11th, Radboudumc, Nijmegen.

Download the presentation of Steph Garfield-Birbeck (pdf)

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