The Mission of Advocates and Industry are Not at Odds

 In Advocacy Relations

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At JPA, we believe in collaboration between patient organizations and pharmaceutical companies. So much so, that we have an entire team dedicated to patient advocacy relations. In almost all cases, these partnerships are forged with good intentions by people who have the patient’s best interest at heart.

This notion was challenged recently in a New England Journal of Medicine study receiving high-profile media coverage with its clever assertion that the voice of the patient has “a pharma accent.” The authors took issue with widespread industry support of patient advocacy organizations, asserting that too much money is at stake with not enough disclosure.

The reality is that it takes considerable time, energy, and funding to sustain vibrant communities of patients. The key is what types of support are appropriate, how much, and from whom.

It’s up to both sides – advocates and industry – to be proactive in communicating when there is any financial relationship or could be a perceived conflict of interest. Here are just a few of the ways to ensure mutually positive collaboration:

Patient groups can do more to erase questions about conflicts of interest

  • Have a policy and share it – An established policy can reduce the potential for harmful conflicts of interest and engender greater public trust, say the NEJM study authors.
  • Foster competition – Securing funding from multiple sources, and even competing ones, underscores the organization’s commitment to patients over any one company or therapy.
  • Disclose everything – Sources of funding should be prominently disclosed on program materials, in annual reports, organization websites, and more.

Industry can take the lead

  • Think beyond grants – Find non-funding opportunities to partner in the patient’s interest. When funding is provided, make sure it’s as low a percentage as possible of total funding for the organization.
  • Be transparent – Closely track the levels of financial support provided to groups to minimize potential for undue influence, and be up front about who has received money for what.
  • Require disclosure – Being open about funding, goals and outcomes associated with every dollar should be a priority for the company and all advocacy partners.

Hold yourself to higher expectations

While advocacy organizations catch up to new expectations for disclosure, internal monitoring systems on the industry side haven’t kept pace with the industry’s increasing complexity.

Consider a company with deep pipeline in a specific therapeutic area, having multiple marketing teams, a patient advocacy team, corporate affairs, policy teams, and a robust sales force. Then take a high-profile advocacy group doing work across the therapeutic area with local chapters, and programs in many types of related conditions. It’s easy to understand how one company could be providing significant support to one group, with several different grants from different places in the organization.

Over the last ten years, we’ve helped companies establish robust advocacy programs and build the necessary infrastructure, such as centralized grant portals, revamping internal tracking systems, and refining funding strategies.

The opportunity is to underscore the good intentions behind these collaborations and work proactively to get rid of lingering doubts. When it comes to advocate-industry partnerships, it’s not a conflict when both sides have the same interest: doing what’s best for the patient.

 

Adam Pawluk is a Senior Vice President at JPA Health Communications with a focus health campaigns that engage patients to take action.