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:

2022 Science of Patient Engagement Symposium

10/19/2022 9:00 am, Virtual

The National Health Council (NHC) announces the theme of the 2022 Science of Patient Engagement Symposium, From Research to Action: Health Equity for All. Over the past couple of years, the COVID-19 pandemic has upended the world, and health inequities among historically underrepresented racial/ethnic groups have magnified. The science of understanding the patient has never been more important. Specifically, health equity research, where diverse patients are at the core of scientific inquiry, is imperative to tackling these issues.

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An Introduction to Digital Health for the Patient Community

02/11/2022, Virtual

During this three-part series, our guest speakers will introduce attendees to key topics related to digital health.

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NHC Comments on FDA-2020-D-2316 for Benefit-Risk Assessment for New Drug and Biological Products; Draft Guidance for Industry


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