Who truly represents the patient perspective?


As researchers, regulatory bodies and health systems give patients more of a voice in consultation and decision making, advocacy groups are questioning what it really means to represent the patient view.











Nothing about us without us. So goes the mantra of patient organisations around the world, asserting their right to have a say in health decision-making.


Five words that make patient involvement sound so simple. But a growing body of patient organisations are asserting that it’s anything but simple: the whole idea of ‘patient representation’ is flawed and needs a re-think.


Conventional models of patient representation bring risks. For some committees, companies and organisations, having a patient on the panel simply means they can tick the patient involvement box and move on.


“It’s far too easy for health technology assessment organisations or pharmaceutical companies to say that they have a patient on their committee and therefore they have had patient input,”


Equally, long-standing patient representatives can lose their independent perspective as they become embedded into formal committees and organisational norms. “Some even see it as a conflict to be in touch with the patient advocacy group – that if they consult patient organisations or advocates they’ve somehow gone over to the other side and will introduce bias. The esteemed people on the committee become their tribe and closest affiliation.”


And then there’s the question of how ‘representative’ patient ‘representatives’ can actually be. Patient organisations have become concerned about the number of committees where one or two firmly established patients are there to represent all patients – even in discussions that relate to a entirely different from their own.


“As long as patients on committees are expected to represent the views of hundreds of people whose experiences may be entirely different from their own, they are in a very vulnerable and ineffective position”


Those who represent patient interests in complex technical discussions are also vulnerable to criticism. Discussions on the relative risks and benefits of specific drugs, for example, may require some expert knowledge from the patient representative. But people with that degree of understanding are then accused of no longer being representative of most patients.


Evidence-based advocacy


A growing number of patient advocacy groups are adopting the idea of ‘evidence-based advocacy’ to replace conventional ideas of ‘representation’. It involves letting go of any expectation that one patient should be able to represent everyone. Instead, patients on groups or committees gather, filter and convey information about the patient perspective on a particular issue from a variety of sources. They become a conduit for evidence from the relevant patient community, not a narrator of personal experience or opinion.


“I don’t in any way want to take away from the value of people conveying their personal narratives, but patient representatives now need to be equipped with a new skill set”




















If a committee includes a patient who cannot demonstrate how they regularly engage with a broader community, then I think we should be calling that representation into question. In the worst cases that representation is bringing in commentary that is subjective and not in any way evidence-based. It’s come out of the blue sky.


There are plenty of opportunities for gathering information from specific groups of patients, including conducting online surveys through software such as Survey Monkey, gathering opinion at conferences, and conducting Facebook polls. Because of social media, it’s never been easier to gather information, It’s not that hard to produce data.




I think patient advocates should raise awareness of patients’ new needs and defend the right to equal access to innovative and sustainable medicines, and access to clinical trials. That doesn’t mean they should be involved in supervising clinical trials. We need to trust the experts and scientists: they’re not against the patient.


We know that inequalities are the worst thing affecting patients, so we want to find and fight the worst disparities in treatment. We know that this is the problem that each patient organisation is fighting. We want to ensure meaningful innovative treatments for all who need it. But here is a danger that some patient representatives get too engrained in systems and lose their independent perspective.


More than one approach


So where next for patient advocates? Keeping independent, having expert knowledge, being informed by data, being alert to grass roots opinion, pushing for equity of service: it’s a ridiculously tall order to keep everyone happy.


My view is that patient involvement is best achieved through a collection of approaches. We don’t expect patients to be taking over the role of the regulators, but the decision will be much more informed by this variety of approaches, sometimes expert opinion, sometimes a more population-based study on patient preferences and so on.


Sometimes a single conversation with a single patient will highlight something really important to follow up, It’s not that there’s one best way to engage with patients. It depends on what the level of activity is, and what information you want at that particular time. You need a toolkit of approaches you can choose from.


“Having an evidence base to your advocacy takes away the criticisms of how representative you are”


It brings you closer to your population. It guards against bias. And, in a way, it’s liberating, because you’re free to explore and measure. It’s not about being right. It’s about understanding what the problem is.