Hooray for patient engagement teams

Patient advocate Andrew Schorr welcomes pharma’s efforts to listen to, and work with, patients and calls for company-wide support for these new initiatives.

Andrew Schorr

Lately I have had the chance to speak with the small teams or individuals who have been tasked by their pharma company CEO to develop new approaches to listen to, interact with, and support patients – the patient engagement ambassadors. And they have to break down barriers within their own companies to make such progress happen.

Some companies are well-resourced; others have one person learning their way around. But, having spoken with several, I believe they are all sincere in their efforts, will have funds to get things done, and have mandates from the ‘C-suite’ to ensure that all the ‘princes’ and ‘princesses’ in different departments pay attention and collaborate. It’s a ground-breaking job.

As a patient and patient advocate myself, operating globally, I welcome this development.

It is important to start with listening. In my experience patients with the diagnoses pharma companies care about are willing to talk. Recently we connected 15 leukaemia patients with pharma leaders in an hour-long live video conversation. We hope to do more such link-ups; the patients who participated loved the fact that drug developers were listening.

One cautionary note: a word that is being bandied about by pharma companies or their agencies is ‘co-creation’ of content. Patients do not want slick or cartoonish content that the industry controls and is seen as one-sided or quickly out of date. Instead, pharma should support third parties who can move much faster and with great credibility and growing reach. Also, the industry shouldn’t try to control the discussion. In this age of Twitter and other social media channels, things are moving really fast – too fast for typical pharma processes – and across borders for patients and their doctors.

I am hopeful that the patient engagement people who understand the new paradigm will get support for operating in new ways, as it will benefit their companies as a whole, many internal departments and, of course, patients.

Again, thanks to the CEOs who ‘get it’ when it comes to the patient voice and are supporting new teams to make sure it is heard loud and clear within their companies.

About the author:

Andrew Schorr is the founder and president of Patient Power, a patient organisation that produces educational content on video for cancer patients and family members in the US and Europe. Andrew is a two-time cancer patient himself and, since 1984, has been a pioneer in communications programmes for patients. Patient Power’s editorially-independent content, available through patientpower.info and patientpower.eu and many other partner and social media sites, reaches over 50,000 patients a month. The content also has been viewed more than 2.1 million times by oncology professionals on oncologytube.com.

Read more from Andrew Schorr:

Patients at medical congresses – here to stay