PLAYBOOK | Importance of Sharing Patient Insights
Importance of Sharing Patient Insights Internally & Externally with PAGs and Constituents:
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:
- Consider sharing insights gathered through interviews, advisory boards, surveys, etc.
- Always share your readouts (and how you plan to integrate your findings into your work) with all participating advisors, survey participants, connectors, etc regardless of your ability to share publicly. If sharing publicly, make sure to share readouts with your advisors for their feedback before sharing with the wider community.
- Make sure to appropriately share your failures. If you are unable to complete a focus group, survey, or advisory board consider why and share with others so that they can learn for future engagements.
Sharing Insights Internally
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.
Go Back:
Downloads:
1. Establish WHY you need a knowledge base
- To determine what you are doing now that’s not working / not efficient
- To break down silos
- To get more ‘lifespan” out of the content that is already developed
- To optimize cost savings: not duplicating work
- To maximize the time value of finding what you need quickly or establishing what DOESN’T exist quickly so that you can focus on information gathering/data generation
- To avoid having to rely on institutional knowledge strictly available from people
2. Define your WHAT
- Establish connections with any knowledge management people within your organization as well as IS / IT (Information Services / Information Technology). This is likely one of the biggest challenges depending on the size of the organization and capabilities.
- Establish guardrails around the scope, such as:
– Target audience
– Access
– Value proposition (See your WHY) - Define your Present and Future states
3. Establish your HOW
- Define data capture and design parameters
- Identify and secure resources/funding/sponsorship
– How difficult will it be to not just implement, but also to carry through to a steady state (maintenance) through communication and usage? - Buy-in / adoption / change management modeling (again, see your WHY)
- Highly recommend staging the release of a tool and usage in a phased manner–i.e. creating a “pilot” with a smaller team; obtaining feedback and making changes
- Do not forget about Governance: who will access this and to what end?
- Process improvement for the future: what does success look like? Determine what metrics make sense
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:
- Consider how patients could contribute to the research plan, including participating in a publication steering committee as contributors or authors and publication reviewers. To facilitate patient authorship it is important that to identify the opportunity early in the planning process and involve the patients/caregivers as soon as possible.
- Determine IRB requirements for conducting research.
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.