The OPEN Health Spectrum of Patient Engagement with the Pharmaceutical Industry
Much progress has been made in enabling effective collaboration between patient communities and the pharmaceutical industry. There are some fantastic ongoing partnerships where trust, transparency, and appropriate win-win relationships have been forged over many years. However, we must face the reality that we have further to travel to achieve a wholesale recognition of the true value of collaboration and equitable partnerships, and to achieve trust among all members of both parties. There remains significant mistrust of the pharmaceutical industry within some patient communities. There’s also uncertainty among researchers about how to ensure equitable relationships while maintaining a partnership of independent voices grounded in compliance.
It is clear that to create the level of trust that will be needed for a true partnership between industry and the patient community, there is still much work to be done. And this will demand thoughtful communication. Individual projects will have unique participation requirements, and the process will evolve as collaboration becomes more frequent and trust increases.
With this in mind, we have created the below infographic to guide stakeholders in increasing patient participation in their projects.
The infographic presents the various levels of patient participation that collaborative projects may offer. It identifies that sweet spot where co-creation and sustained partnership can bring the greatest value to patient communities, the pharmaceutical industry, and the HEOR process. We do recognize that participation does not have to fall into that sweet spot to have value. Patient involvement can and should evolve as projects develop and trust grows.
The objectives of the Spectrum of Patient Engagement are to:
- Guide the industry in establishing relevant levels of participation with patient communities to help move away from token engagements and instead move towards true partnership
- Seek stronger partnerships as treatment innovations generate a greater need for collaboration
- Understand that individual projects will require different levels of collaboration
- Recognize that building trust and the industry’s reputation will open up possibilities for deeper and more sustained engagement 5. Support the industry and patient communities to better engage so that they will collaborate more effectively to achieve better outcomes