With increased interest in incorporating patients’ insights into drug development, the advocacy community is increasingly becoming overburdened by requests from industry. It is vitally important that industry shares the patient insights gathered both internally to their organization and externally, when appropriate, with the broader community.
PALADIN recommends that pharmaceutical companies:
Oftentimes companies make significant investments into gathering patient insights – but don’t manage them effectively. They’re used once for a limited audience and then essentially lost to the organization as they become difficult to find. By managing key assets and making them easy to discover, we can save time, avoid rework, improve decision making, and increase impact.
To do this, companies should implement a platform comprised of a simple process, intuitive technology, and robust change management to sustain usage.
1. Establish WHY you need a knowledge base
2. Define your WHAT
3. Establish your HOW
Beyond a Knowledge Base repository, consider other ways to share insights internally through regular team meetings, Lunch & Learns, through various communication channels, etc.
Publishing Insights Externally
It isn’t always feasible for a company or advocacy organization to publicly share case studies or data in a public forum.
Publication of data is often outside of the scope of a company’s patient advocacy function or a patient advocacy organization, but it doesn’t have to be. A thoughtful approach to a patient insights project can yield valuable insights for the broader patient community and should be shared externally.
But, where to start?
1. Before the study or research has commenced, you should hone in on your research question and proposed approach.
2. Conduct a review of currently available secondary research.
3. Write up your research plan:
4. Implement your study or research plan and collect data.
5. Reach out for advice and guidelines from an internal publications team or through the advocacy community.
6. Evaluate the data and hone in on your key findings.
7. Select a target journal or conference to publish the research. When sharing insights publicly, consider the audience you’re trying to reach and create the read out or publication plan accordingly.
8. Start writing, which will likely be the hardest part!
9. Once ready for publication, submit it to your desired publication(s) or conference(s).
Thanks for joining us on this journey to improve clinical trial participation and transform the pace of medicine’s development through more effective collaboration! In 2024, we will be adding some new resources, such as best practices for a joint collaboration on target product profiles between patient advocates and pharmaceutical companies, ways to ensure sustainability for community engagement programs at the local level, and opportunities for patient organizations and industry to make clinical trials more accessible among diverse populations.
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