Excerpts from an article for Pharmafield by Claudia Rubin:
“What is a patient group?”, a friend of mine enquired during one of our recent regular political discussions. It struck me afterwards that given that she – an expert advocate in her own field – had little awareness of their existence or understanding of their role, what might this say about their political influence? Or put another way, is the political capital of patient groups ultimately limited because their reach does not often extend beyond their disease area to the wider public? After all, it is typically only during or after diagnosis that one engages with the community one has been unwillingly thrust into. Once you have a vested interest, you and the group that represents you rightly seeks access to the best care. But does this model work sufficiently well?
Strength in numbers
The value of the relationship between patient advocacy groups and the pharmaceutical industry is widely accepted. These partnerships can help to ensure the needs of patients are incorporated from early drug development stage and by bringing their unique perspectives to the table, patient groups help shape thinking around drug use and service design. They help industry to understand the needs of the community, driving innovative patient care solutions. In return, drug companies have extensive scientific knowledge, resources and experience to share with patient groups. This support is becoming ever more useful as patient groups demand a more active role in policy making discussions, driven by their sense of the growing importance of fighting for their rights to access healthcare.
The patient perspective
Working together to ensure that patient perspectives are heard in policy-making and in reviewing new therapies does not come without its challenges. Industry is rightly governed by strict codes of compliance when it comes to these relationships, though patient groups have less certainty about the rules of engagement. They seek confidence that drug company support would not jeopardise their group’s integrity or influence, especially since many realise they could be doing more to make meaningful contribution to policy-making and commissioning decisions. Because while the value industry places on the patient perspective is well recognised, it is less clear what value the NHS assigns to it.
On the face of it, the signs are good. Patient and public participation in healthcare commissioning has been increasing, particularly since the health and care reforms of 2013. NHS England set out its ambition of strengthening patient and public participation in all of its work with the publication in April 2017 of a Patient and Public Participation Policy.[i] The 10 principles underpinning NHS England’s approach in this regard contained within this document offer very helpful benchmarks against which actual patient experience can be assessed.
There is much progress in specialised commissioning too, where an NHS England framework for patient and public participation recognises that it is an ‘essential component of commissioning, and should be considered at all stages of the commissioning cycle.’ This means there are now patient representatives on every clinical reference group, programme of care board and on the specialised commissioning oversight group. There are rules dictating that policies put before decision making panels must demonstrate that an appropriate level of stakeholder engagement has taken place.
Which brings us back to the relationship with drug companies. Should patient groups be tapping into industry support that enables them to conduct research early on, that will then qualify as evidence? Would it serve to increase the value assigned to patient input and thus enable patients to make a greater impact on commissioning decisions? If so, it may be that the terms of engagement between patient groups and industry need reviewing to head off any claims that could undermine the validity of patient group research. Also to create a level playing field that helps very small patient groups navigate complex processes and tap into resources that facilitate patient research. The NHS has come a long way towards genuine clinician and patient involvement, and with further smart partnerships, patient groups may become better and more evenly equipped to make highly valuable contributions to decision-making.
You can read the full article here: https://www.pharmafield.co.uk/Pf-Fox-News/Top%20Story/2018/05/How-much-political-influence-do-patient-groups-really-have