On the day after the US Elections – people in Brussels, as elsewhere in the world, were preoccupied by what the results mean for all of us. Nevertheless, the EFPIA Collaboration Summit steamed ahead here in Brussels, and brought together a range of health community stakeholders to discuss ----- what? Well a range of issues, including:
- Greater health system efficiency;
- Making health budgets sustainable with ageing populations;
- Better evaluation of innovative medicines; and
- How can we all collaborate in the health community to meet these challenges?
Yes all these things were discussed, but the most striking point of discussion was perhaps the proposition that
- Healthcare is there to serve patients
This was the premise put forward by Bettina Ryll of the Melanoma Patient Network and Chair of the European Society of Medical Oncologists (ESMO) Patient Advocacy Working Group.
Bettina spoke movingly of the path that had brought her to being a patient advocate: her husband died 9 months after being diagnosed with late stage melanoma. She has since been a driving force behind empowering patient advocates - helping patients become spokespersons for themselves and the patients they represent, raising awareness and understanding of their disease right through to clinical trial design.
She has also ensured that the ESMO advocacy track itself no longer runs in parallel with scientific sessions, so that patient advocates can attend the scientific sessions that are relevant to them. Her thesis is that indeed healthcare needs to serve patients, but that not only patients benefit.
You may well be saying: this is not striking, it’s common sense, isn’t’ it?
But that raises the issue around the word: “Patientcentricity” and understanding the phrase “You don’t know what you don’t know”. Bettina underlined that patients are the most underused resource in the health system. There are many more patients than health care professionals – so a very large resource is available, and one which can help drive value based outcomes.
It’s no longer an issue of living longer but rather of living well. A striking fact she raised is that patients are far more willing to take risks in relation to a new treatment than carers or regulators. So what are the key elements of Bettina’s view of “patientcentricity”? Patients can provide access to knowledge that no one else does. Furthermore, patients are a growing population and are more educated than ever before. We are all patients or will be, and we therefore need to treat patients as contributing members of society. Last but not least, we need a methodology to help capture patient data that will help all of us.
Some wise words for us all to ponder as we grapple with society’s health challenges.