If you were looking for a sign that patient engagement is going mainstream, here it is: this year’s Cochrane Colloquium shone its powerful spotlight on the need to involve patients at every step of the healthcare system.
Cochrane is a champion of evidence-based medicine and a genuine global trendsetter. With 11,000 members and 35,000 supporters in more than 130 countries, the organisation has a reputation for independence and quality that puts it in the vanguard of modern medicine.
By putting ‘patient engagement at its heart and being a ‘patients included’ event, the Colloquium sent a strong signal – no more should we talk about patients without patients. In fact, the event itself was co-designed, co-produced and co-presented with ‘healthcare consumers’.
I went to the Edinburgh event to find out just how far along the Cochrane community is on its journey to involve patients in its work. Listening to the various speakers, it became clear that some are very advanced in their thinking and practice of patient engagement. Others are at an earlier stage but will have left Scotland with a renewed sense that PE is the future.
There were some truly inspirational speakers. One of the outstanding contributions came in the keynote session ending the conference. It was from Dr Victor Montori of the Mayo Clinic in Rochester, Minnesota, USA. As Professor of Medicine, specialised in evidence-based medicine, he put evidence and data front and centre in the conversation about the need for radical reinvention of health systems. Dr Montori’s vision, for a ‘healthcare rebellion’ that would create truly patient-centred healthcare energised attendees and ignited debates – and coffee-break conversations – about how to translate this into action.
— Cochrane UK (@CochraneUK) September 18, 2018
Away from the podium and panel discussions, the debate on patient engagement continued online. Sally Crowe, an Oxford-based expert in health research partnerships, challenged health professionals and academics to discuss why patients should be involved in the medicine development process. They answer, she argued, would guide fruitful collaboration. It sparked a fascinating discussion on Twitter which you can read by clicking below.
One reflection from the final morning of #CochraneForAll… there is the WHAT, WHO, WHEN, and WHERE of public involvement in research (reviews), but the most important ‘W’ is WHY? If we can’t answer that then should we respectfully desist? #PatientsIncluded pic.twitter.com/i8hBc5ASW7
— Sally Crowe (@sally_crowe) September 18, 2018
For many attendees, the ‘why’ was easier to answer than the ‘how’. With some notable exceptions, there remain plenty of researchers and organisations who are passionate about involving patients but are still a little stuck when it comes to execution.
The good news is that they are not starting from scratch. PFMD is playing its part in driving the research community forward by providing practical tools that help others deliver on their enthusiasm for PE. We are mapping patient involvement initiatives from around the world, sharing PE quality guidance, compiling best practice examples, and helping the community to navigate legal and crisis management issues by publishing practical toolkits.
The take-home message from the Cochrane Colloquium was that researchers are ready for patient engagement. Our message to them is that you are not alone – and you do not need to start with a blank page. The tools above can help you to turn enthusiasm into action.