At a recent panel discussion at BIO’s Patient and Health Advocacy Summit, representatives from biopharmaceutical companies and patient advocacy groups discussed the importance of working together to raise awareness and understanding of a disease, and to advance patient-focused public policies. The discussion also emphasized the need to adhere to basic principles of interaction that involve independence, mutual trust and respect.
The panelists recommended that patient advocacy groups have their own governance documents to guide interactions and to maintain both scientific advisory boards as well as boards of directors to lean on for direction and advice.
Patients and patient advocacy groups are no longer passengers on this drug development journey, they are co-pilots. Applying best practices across four stages of engagement with biopharmaceutical companies will foster better relationships and minimize negative scrutiny.
- Identification & Engagement– patient advocacy groups should be proactive, upfront, and transparent while seeking industry partners and view all collaborations/partners through the same lens. They should make certain that any industry relationship is completely aligned with the mission and strategy of the organization. Patient advocacy groups should have a clearly defined mission statement and contract in writing with any partner regarding objectives of any initiative. A patient advocacy group should also strive to remain independent and contract with multiple industry partners to promote diversity.
- Consider: Draft a clause in engagement contracts providing a right to disengage from the partnership if necessary.
- Engagement & Privacy– Patient privacy rights should always be at the forefront of all interactions. Patient groups should clearly define the purpose and objectives for interaction with biopharmaceutical companies and expect learnings to be shared openly.
- Consider: Lead a discussion in protecting and memorializing privacy rights. This should be a dedicated function within your PAG separate from revenue generation.
- Financial Contributions– Transparency regarding contributions is critical. Partnerships should support the organizations’ strategic goals and contributions should either be unrestricted or exclusive to sponsorship of a specific activity. Uniform written policies and procedures should be set up in advance and not drafted on the fly. It would be wise to seek multiple partners to avoid real/perceived exclusivity.
- Consider: Establish ways to be transparent regarding funding and report results (e.g., on the organization’s website).
- Clinical Trial Communication & Support- Patient advocacy groups should provide unbiased education to patients on the importance of clinical trials to enable informed decision making without any influence. Fair and balanced information should be disseminated without opinion or commentary.
- Consider: Draft a written policy on use of social media for the organization.
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