There can be no more excuses.
From EFPIA to the ABPI, guidance for working with patients and patient organisations is clear: pharma can and should engage with this important stakeholder.
But beyond regulatory and compliance considerations lies an equally important question: how can we realise the benefits of patient engagement?
Before we answer the how, let’s first consider what those benefits actually are. We need look no further than the major challenges currently faced by pharma at every stage of the product life cycle: clinical trials are delayed or discontinued because of issues with recruitment and retention; new innovations are not reaching the people who desperately need them due to affordability debates, and poor adherence to medicines means patients are not achieving the outcomes seen in the clinical trial setting.
All these challenges are highly complex and require multi-faceted solutions, but a key component must be patient engagement. Without working with patients to develop therapy profiles, design trials, define value and create support services, then it is certain that these long-standing problems will persist.
A ladder towards partnership
Patient engagement will only be successful in helping to solve these problems if we collaborate as genuine partners, sharing power to allow patients to participate in the decision-making process. Merel, who lives with a rare disease, agrees: “As patients, we have the experience of what it is like to live with our condition; nobody else can really understand it. If you trust us to make decisions with you then we can create something valuable.”
But too often, engagement occurs in a tokenistic way, whereby patients are listened to but not heeded. In this scenario, we don’t just lose the benefits of patient engagement but we also risk causing harm. It is “an empty and frustrating process”, according to Sherry Arnstein, who highlighted this challenge in her influential journal, Ladder of Citizen Participation, which although written in 1969, is just as relevant today.
Arnstein describes a ladder with eight rungs, which is used by the public to participate in an activity. The lowest two rungs are Manipulation and Therapy, which Arnstein says make an appearance of engagement but are actually just education.
The next three rungs, Informing, Consultation and Placation, are described by Arnstein as tokenism to varying degrees, where participants have a voice but they lack the power to ensure their advice will be acted upon by decision-makers. At the top of the ladder are the levels of participant power, Partnership, Delegation and Control, where people are empowered to a lesser or greater extent to make decisions.
There is no clear-cut way to plot where pharma as a whole currently sits on Arnstein’s ladder but, according to the report ‘Corporate Reputation of Pharma in 2018 – the Patient Perspective’, just 36% of patient groups globally said pharma was either excellent or good in its partnerships. Hardly a ringing endorsement, but not necessarily surprising either.
Patients have traditionally held the least amount of power within the health system, and healthcare professionals and providers are accustomed to telling them what to do. But colliding factors, such as the arrival of the internet, a rise in patient activism (as reported in PME’s July edition), improved healthcare choice and a greater emphasis on shared decision-making and prevention, have given patients the motivation and the means to engage with and challenge the traditional power brokers in healthcare.
Guided by values
This doesn’t mean that every patient interaction should be treated as a partnership. On the contrary, there are activities (eg, quantitative market research) where proposing such an interaction would be unnecessary and inappropriate.
Likewise, full citizen control may tip the scales of power too far on the patient-side and put them under pressure to make decisions beyond their expertise. The sweet spot sits at rung six of Arnstein’s ladder, Partnership, where patients are recognised as experts on their experience and treated as equal partners.
Although sharing power is the cornerstone of creating a good partnership, there are other core values required for it to thrive: All parties need to contribute to and agree to ground rules that will guide their partnership; transparency about intentions and boundaries is
vital; information must be shared in lay terms so all parties can contribute in an informed way; accessibility must be assessed to ensure there are no barriers to participation, and patients must be treated as experts and recompensed accordingly with reasonable honoraria for their time.
Guided by our PARTNER values, specialist healthcare communications agency Aurora and PIP Health, a patient research organisation of thousands of patients across Europe, have formed a unique collaboration to help ensure patient engagement success for our clients. Read more about our patient involvement offer here.
This article was first featured in PM Live which you can read in full here.