NHC Focus On: Patient Engagement

By Theo Smith, Associate, Marketing & Communications  

Capturing and including the patient voice is central to all the National Health Council (NHC) does.  The NHC seeks to identify and implement best practices for integrating the patient voice into the conduct of research and health care decision making. Following are a few examples of the NHC’s patient engagement work.  

Sponsor-Patient Engagement Toolbox 

The NHC recently released Patient Contracting Tools, including a Template Legal Agreement and companion documents to assist patients/patient groups and pharmaceutical companies collaborating on patient engagement activities. 

The contracting tools complement those released i2020, including a first-of-its-kind Patient Engagement Fair-Market Value (FMV) Calculator. The FMV Calculator helps to determine compensation for patients, caregivers, and patient groups involved in “patient engagement activities” taking place between patient organizations and/or individual patients and private companies.  

Real-World Data and Real-World Evidence Training Series 

The ongoing NHC and Duke-Margolis Center for Health Policy training series for the patient community: An Introduction to Real-World Data (RWD) and Real-World Evidence (RWE), highlights guest speakers from across the health care community that discuss the importance of RealWord Data and Real-World Evidence to patients and patient groups.  

Other RealWorld Evidence Initiatives 

In addition, learn about our upcoming consensus recommendations that will provide guidance on how to identify and incorporate meaningful patient engagement in the design, conduct, and translation of real-world research that reflects patients’ lived experience on the Real-World Evidence Classroom 

Patient-Focused Medical Product Development (PFMPD) Webinar Series 

The NHC’s PFMPD webinar series covers a broad range of subjects, including patient preference research, patient engagement in clinical trial design, as well as medical device development. The NHC seeks to ensure that the NHC membership is prepared to engage in conversations on all aspects of PFMPD. It is complementary to our other work, including PFMPD Case ExamplesSponsor-Patient Engagement Toolbox, and Rubric to Capture the Patient Voice. 

Coming Soon! Patient Experience Mapping Toolbox 

The NHC is focused on ensuring the patient’s experience is collected in standardized ways to inform patient-centric efforts in research, product development, and care delivery. Patient-friendly tools are needed for capturing “real-world” patient experiences and the patient journey, leveraging sound existing materials and content. To that end, the NHC is developing a Patient Experience Mapping Toolbox, which will be released later this Spring. 

For more information and resources on patient engagement, visit our Issue Page. 

Other resources:

FDA Commissioner & Leading Experts Promote Vision for Patient-Centered Digital Health Care at NHC Symposium


The science of patient engagement must not take a back seat to rapid technological advancements in health care according to more than 160 nationally recognized policymakers, researchers, patients and patient advocates, and health care providers participating in the National Health Council’s (NHC) 2023 Science of Patient Engagement Symposium: Patient Empowerment in the Digital Era, held today at the National Press Club.

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2024 Science of Patient Engagement Symposium

05/08/2024 12:30 pm, National Press Club

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2023 Science of Patient Engagement Symposium

05/08/2023 8:00 am, National Press Club

Join the National Health Council (NHC) for its 2023 Science of Patient Engagement Symposium on May 8, 2023, from 8 a.m. – 6 p.m. ET, our first in-person Symposium since 2019! Taking place at the National Press Club in Washington, DC, the theme for this year is Patient Empowerment in the Digital Health Era, and will focus on digital technologies, the science of patient engagement, and health equity.

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