Beyond politics; patient groups and the art of influence

“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?

Fair share? 

Conditions that capture the attention of the wider public do seem to fare better when it comes to their share of the NHS pie. Take investment in cancer vs neurological conditions for example. Breast cancer vs prostate cancer. Common conditions vs rare diseases. But if wide public support cannot be relied upon when it comes to patient advocacy, then we must examine to what extent patient groups are doing everything they can to raise their value amongst policy circles.

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.

Strengthening participation 

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.

The patient voice 

So, why do people still feel that little real weight is given to patient testimony? It may be that there is a difference between a patient representative offering a general patient perspective, and the specific input that only specialist groups can give. This may be particularly true for decisions about services for rare diseases, where a deep understanding of the patient experience can be best informed by someone from that particular disease’s community. In specialised commissioning in England, the opportunity for this patient input happens at the evidence review stage, but other than adding general colour to the picture, most of what patient groups say is not considered as evidence of clinical benefit.

What’s the benefit? 

The director of specialised commissioning has acknowledged that in making its relative prioritisation decisions, the clinical priorities advisory group (CPAG) is not there to make a judgment of whether one condition is worse than another. Rather it compares only whether one treatment has greater clinical impact on a certain condition than another treatment has on an entirely separate condition. NHS England maintains, therefore, that it can rank treatments according to how much clinical benefit they deliver for different conditions, without needing to understand what it is like to live with those conditions, or in other words, to make comparisons about the relative burden of illness.

Rational approach 

The space for patient participation is thus intentionally rational and eschews the emotional. This does not necessarily need to be the case, and some assessment bodies do readily acknowledge the pivotal role played by patient testimony. So either NHS England decides to assign greater weight to patient perspective, or if it is to continue to base its decision making on rational grounds, then it is incumbent on patient groups to add rigour to their offering.

Smart partnerships 

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.


Claudia is a Director at Decideum. Go to