How pharma can embrace the patient revolution

Revolutions are not always obvious. Change occurs when enough people start thinking and acting in new ways, thereby forcing new responses from those they interact with. This is precisely what is happening in patient communities across all therapeutic areas and in all developed countries.

The main activists in the patient revolution are patient opinion leaders (POLs), who have amassed impressive online followings among fellow sufferers because of their understanding of a disease area and their personal experience of living with it. Many are survivors of that disease and their encouragement to others is based on the conviction that people must take responsibility for their health and urge others to do the same. Specifically, they want people to learn about their disease, to challenge their doctors, to campaign for treatments that could help them, to have greater access to their medical notes and, more generally, to raise their expectations about what can be done.


“Patient Opinion Leaders (POLs) are the main activists in the patient revolution …they want people to learn more about their disease, to challenge their doctors”


This revolution by stealth is helped by the fact that physicians and healthcare systems are being strongly encouraged by their political paymasters to at least try to see things from a patient perspective. Everyone wants to be patient-centric. POLs are riding that wave and taking it in directions that pharma companies would be well advised to follow.

The reasons for this are outlined in a new report I recently produced entitled, ‘Patient opinion leaders: the new KOLs for pharma?’ Based on both secondary research and interviews conducted with key experts in this space, it explains why POLs matter to pharma, the evidence of their influence and how pharma can best engage with these new and increasingly important healthcare stakeholders.

The messages are clear and apply across all therapeutic areas. This is despite the fact that conditions such as cancer, where the prognosis is dire and new science is constantly emerging, give rise to a far greater number of POLs than, say, Alzheimer’s disease, where the prognosis may be equally dire but the nature of the condition means patient advocacy groups and carers tend to play a greater role in raising awareness of what living with it involves.

The number of POLs arguably matters less than an appreciation of the dynamics of the patient revolution. It is important to understand, for example, how it is ushering in new language as well as new sources and patterns of influence. The word patient is rarely used these days without caveats to ward off any sense of victimhood, as people learn to live with conditions in more positive ways.

“People used to be victims of ill health; now they are seeking victory over ill health,” says Emma D’Arcy, formerly Head of Patient Engagement at inVentiv Health. “They expect more. “They are no longer thrilled if a pharma company has lines of communication open to them. They expect it.”

“You can’t look for poster-children to support your company. They want to know what your company is doing to support their community and advance its science” – Andrew Schorr.

The movement is also making illness more openly discussed and seen more as a family affair with adult children and carers becoming key players. And as it accelerates, POLs are increasingly driving the agenda. “Patients will talk to you but they will also ask what you will do in return,” says cancer survivor Andrew Schorr. “You can’t look for poster-children to support your company. They want to know what your company is doing to support their community and advance its science.”

The implications for pharma companies are as varied as they are profound. The report cites patient-based research from GlaxoSmithKline that has changed its marketing practices, and from oncologists campaigning for the patient perspective to be incorporated at every stage of the patient journey from diagnosis to treatment. Patients can be natural allies of pharma because they have a common interest in new and effective treatments being developed. But pharma companies need to understand more deeply where these new patients leaders are coming from to effectively engage with them.

Find out more or purchase the report by visiting the page for ‘Patient Opinion Leaders: the new KOLs for pharma?’



About the author:

Jacky has been writing about pharmaceuticals since joining Scrip Magazine in 1998, before becoming a regular columnist for Pharmaceutical Executive. From 2010 to 2013 she wrote industry reports for FirstWord.

At pharmaphorum Jacky is leading on the production of unique and insightful research reports covering the key issues impacting the global pharmaceutical industry.

You can follow her on Twitter here.

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