Do patient advocacy groups and pharmaceutical companies need marriage counseling?

A new study suggests that the relationship between patient advocacy groups and pharmaceutical companies, particularly those carrying out clinical trials, is hitting a bit of a rough patch. And that could have big consequences for both parties.

Working together to make a clinical trial succeed

Working together to make a clinical trial succeed

In the past, patients and patient advocacy groups were very much an afterthought when it came to planning clinical trials. Many times they were only brought in to the discussion when pharmaceutical companies had a product they wanted to market or when researchers needed help recruiting patients. Today it’s quite different. Many patient advocate groups are more closely connected with those behind the clinical trials, offering support and advice in helping shape those trials.

Now a report from InVentiv Health, a provider of drug development services for the global pharmaceutical market, suggests that relationship might be experiencing some tension.

Heather Gartman, the regional managing director of InVentiv Health, talked about the report in an interview on Daniel Levine’s *Rare Cast podcast.

“I view the relationship between Patient Advocates and Pharmaceutical companies as similar to a marriage, it’s a good marriage, but like all marriages it has its up and downs.”

InVentiv surveyed more than forty different patient advocacy groups and found that they want to play a bigger role in the way they work with pharmaceutical groups:

  • They want to be involved earlier and play a bigger role in the design and execution of clinical trials.
  • They want greater transparency from their pharmaceutical partners.
  • They want to have a role in the education of patients enrolling in these clinical trials and the physicians involved in deliver the therapies.

Gartman says the patient advocates feel they have a much better understanding of the needs of the patients and so they should be involved right from the start of planning a clinical trial. They believe their early engagement would be helpful in preparing the company for what it needs to do to better serve the patient community, and in particular in helping recruit and retain patients in these clinical trials.

When asked if these groups had unrealistic expectations of companies, who after all are in the business of making money, she said that the patient advocate groups understand that big Pharma is big business, but that by working together they will actually benefit each other, by speeding up the recruitment for and completion of clinical trials and, hopefully, speeding up the delivery of new treatments to patients.

Gartman says she thinks this is just the natural tension that emerges in any relationship but that long-term the “marriage” is strong, with both parties realizing they have too many shared interests to split up.

“It’s a good marriage, all it needs is a little marriage counseling or some small tweaks to help iron out the bumps.”

At CIRM we try to engage the patient advocate right from the start. Under CIRM 2.0, our new way of funding research, as soon as a company or researcher is approved for funding for a clinical trial we set up a Clinical Advisory Panel or CAP. This consists of one of our Science Officers, an outside expert in stem cell research, and a patient advocate. The role of the CAP is to help guide, advise and counsel the research team at every step along the way. We feel it’s important to have the voice of the patient involved right from the start because they have the most at stake here and they bring a unique perspective to the work.

* RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts.

One thought on “Do patient advocacy groups and pharmaceutical companies need marriage counseling?

  1. Both biomed companies and individual scientists would benefit from making friends with patient advocate groups interested in their research goals. This helps two ways: it shows the company/scientist is not just interested in patients as a source of profit but also as people; and it lets us understand the goals, progress and results of the research– so we can support it.  Don C. Reed Sponsor, Roman Reed Spinal Cord Injury Research Act Founder and Co-Chair, Californians for Cures friend me at: Author of forthcoming book, STEM CELL BATTLES: Proposition 71 and Beyond–for information go to:   Don Reed is also Vice President of Public Policy for Americans for Cures Foundation; opinions voiced here as an individual may or may not reflect those of the Foundation.    

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