Capturing and Including the Patient Voice

There is little consensus-based guidance on how to conduct patient engagement or assess whether an approach to patient engagement will yield meaningful results for all parties involved.  The NHC seeks to identify and implement best practices for integrating the patient voice into the conduct of research and health care decision making.

The NHC released results of a recent Roundtable on participants’ experience with the listening sessions and data submission process of the Medicare Drug Price Negotiation Program. These results offer an overview of the Roundtable’s robust dialog and concrete recommendations to strengthen and increase opportunities for patients to engage with the Agency, specifically to provide their perspectives on their condition and the drugs being negotiated by CMS. These results also offer a longer-term vision and recommendations to apply lessons learned through this program to inform CMS’ patient engagement strategies across the Agency’s workstreams.
 
Read the report here

A Guide to Incorporating the Patient Voice into the Health Ecosystem

Read the Rubric here.

The NHC wants to ensure that all stakeholders confidently enter into ongoing, compliant, and sustainable engagement efforts that effectively drive health care innovation based on patient and caregiver insights, which must be collected in a trusted and high-quality manner. This project aims to support sustainable agreements between stakeholders and the patient and caregiver community as part of medical product development. View the toolbox.

The National Health Council (NHC) is focused on ensuring the patient’s journey is collected in standardized ways to inform patient-centric efforts in research, product development, and care delivery. We want to leverage the tools available and communicate shared learnings. To that end, we have developed a Patient Experience Mapping Toolbox.

The NHC aspires to ensure patient centricity in our health care ecosystem through the implementation of Patient-Centered Core Impact Sets (PC-CIS). Learn more here.

This glossary will help patients, patient advocates, and other health care stakeholders understand what common terms mean and ensure that everyone collaborating to make health care more patient-centric is speaking the same language.

Patient-focused medical product development is a mechanism by which stakeholders, including but not limited to medical product developers, academics, and regulators, form a partnership with patients to enhance medical product development, throughout the research, regulatory, and reimbursement processes. 

Read the case examples here.

As stakeholders across the health care ecosystem embrace patient centeredness and integrate the patient voice into their processes, decisions, and organizations, meaningful patient engagement has become increasingly important during drug development, regulatory product review, and value assessment. In practical terms, this means that patients, including caregivers, advocates, and advocacy organizations, are active, respected, and full partners in the endeavor, and their views are incorporated into all processes. Read more here.

The NHC partnered with the Pharmacy Quality Alliance (PQA) and the National Quality Forum (NQF) to create the Patient Engagement in Quality Measurement Rubric. This guide was created to help include meaningful patient engagement to the quality measure lifecycle. 

Patient Engagement Compensation and Contracting Toolbox

The NHC and our partners have developed tools, including a first-of-its-kind Fair-Market Value (FMV) Calculator, to assist all stakeholders to confidently enter into ongoing, compliant, and sustainable engagement efforts that effectively drive health care innovation based on patient and caregiver insights, which must be collected in a trusted and high-quality manner.

HEALTH CARE QUALITY

This training program focuses on why quality is important in the current health care environment and how patients and patient organizations can become strong advocates for quality.

HEALTH LITERACY

In Fall 2021, the NHC hosted Health Literacy: A Three-Part Series to Support Better Communication. 

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