Real-World Evidence Training Prioritization Survey

Background and Survey Purpose

In 2017, the NHC held a meeting, Patient Perspectives on Real-World Evidence: A Roundtable to Gather Views, Needs, and Recommendations, to elicit patient-community views on:

· Real-world evidence and real-world data definitions and uses;

· Characteristics to promote understanding/trust; and

· Skillsets and tools needed to promote patient engagement in research, use, and dissemination

Outputs of our meeting included a whitepaper and corresponding peer-reviewed publication. Included is an extensive list of patient-group reported needs and the tools required to ensure patients can engage in RWE-related research, be a source of sound RWE, and support best RWE dissemination to and use by constituents.

In 2019, the National Health Council, in partnership with the Duke-Margolis Center for Health Policy, received a contract from the Patient-Centered Outcomes Research (PCORI) to develop education and resources to build patient-community capacity in real-world evidence. The purpose of this survey is to revisit the education and resource needs identified in 2017 and to seek input on which topics are most important today and desired delivery modes.

Please contact NHCPrograms@nhcouncil.org with any questions.

This program is funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award (16203-NHC).

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* 1. What stakeholder group do you represent?

Patient, caregiver or patient group staff (including research staff)

Academic Researcher

Healthcare provider

Regulatory agency

Industry (device, biopharmaceutical, etc.)

Insurance (payer), employer or health technology assessment body

Other (please specify)

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* 2. Select your top five priority topics that you would like covered by our training. (Note: an introduction to real-world evidence and real-world data, along with a glossary are already being developed).

Considerations and who to include when creating a real-world evidence scientific advisory council or committee.

The role of real-world evidence in regulatory decision-making.

The role of real-world evidence in clinical decision-making.

The role of real-world evidence in quality measurement.

The role of real-world evidence in value assessment/payer decisions.

Evaluating the quality of real-world evidence for decision-making.

Current rules on patient data ownership/rights.

Information on how members of the patient community can co-develop studies that rely on real-world data.

Developing a patient-friendly summary of a real-world data-based analysis.

Other (please specify)

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* 3. What is your preferred training format? Please rank from favorite first (#1) and your least favorite last (#5).

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* 4. Are there other formats we should consider? Would you rate the other format(s) higher than the formats you ranked above?

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* 5. Are there existing resources you would like us to link our training website to?

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* 6. Do you have any other suggestions?

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* 7. We have limited financial support to help support patient's and patient community representative's (staff members who represent a patient or caregiver organization) time completing this survey. Please enter your email below if you would like to be considered.

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* 8. Would you like to be added to our mailing list? If so, please add your email here. Your email address will not be associated with your responses above.

Thank you!