The JLA was originally created to redress the imbalance between scientific, pharmaceutical, and academic research/ers and the needs / interests / priorities of actual patients, carers, and practitioners.
It was also set up to help combat some of the conflicts of interest encountered when all clinical research is designed and implemented by pharmaceutical companies. Ultimately, the idea behind the JLA is to establish those research priorities that people with LIVED EXPERIENCE want, as opposed to what traditional researchers decide!
A little more about the process that led up to this final workshop:
- Endo is significantly under-funded relative to other diseases with high healthcare burdens;
- This was the first time patients and clinicians had been asked to get involved in deciding on future research priorities for the disease;
- The endo research priority setting programme was a world first – initiated in the UK and subsequently set to go global at the World Endometriosis Congress taking place in Canada next month;
- The process took the form of online surveys created by the JLA – eventually, there were 1286 respondents, and 4767 unique questions raised. From that, the results were whittled down to 72 areas. A second survey was then sent out asking respondents to rank those topics. This led to 30 key questions. Participants in the final workshop had to decide, out of those 30 topics, which ten should be the top priority;
- There were approximately 24 of us in attendance, made up of patient representatives, carer representatives, and clinicians. FTWW was the only organisation representing patients in Wales specifically;
- Before coming to the meeting, we were told to personally decide on our top ten; apparently, if 2 of our choices were eventually featured in the top ten, that was good going. Of FTWW’s members’ priorities, 6 featured in the final ten;
- The ten priorities will now be part of an article to be published in The Lancet and it seems that there are already organisations lined up, ready to fund research into some / all of those priorities. We have been asked to keep quiet on the precise nature of the priorities for now because the organisers want to do a BIG media announcement in the very near future – so watch this space.
At the end of the workshop, FTWW was pleased to be told that the surveys had had a VERY powerful Welsh contingent and that we, as an organisation, were strong advocates for endometriosis patients here.
Please keep your eyes peeled for further updates on the (hopefully) bright future for endometriosis research – and improved treatment as a result!