The National Health Council (NHC) envisions a society in which all people have access to quality health care that respects personal goals and aspirations, and is designed around the patient experience to promote their best possible health outcomes.
By working with all stakeholders, we get things done to improve the health of people with chronic conditions – helping them to live longer and feel better. To achieve our mission – providing a united voice for people with chronic diseases and disabilities and their family caregivers – we rely on a broad base of support. Click here for more information on our sponsors.
Below is the list of activities and programs for which the NHC is seeking sponsorship for in 2019. Contact Elisabeth Oehrlein, Senior Director, Research and Programs, at firstname.lastname@example.org for more information.
The Patient Perspective on the Value of Treatments
The Value Initiative is focused on ensuring the voice of the patient and patient organizations are an integral part of the value discussion. We will:
- Develop and offer intermediate education on health economics and value
- Develop tools to explain the complexities of “value” such as infographics
- Convene a dialogue on patient-centered value assessment between patient groups and employers
- Update content in the NHC Value Model Rubric and Get-Ready Check List
NHC Center of Educational Excellence to Build Nonprofit Capacity
The NHC is developing an online NHC Center of Educational Excellence to make its training programs readily available to patient organizations at no cost. We will develop training and tools on:
- Real-World Evidence
- Clinical Outcome Assessment (COAs)
- Health Economics and Value Assessment
- Advocacy for Patient Groups
- New, timely topics
Emerging Issues Action Fund
The emerging issues action fund enables the NHC to nimbly respond to an ever-changing health policy environment so that the voice of the patient is included in public policy debates and proposed legislation and regulations.
This fund enables the NHC to:
This fund enables the NHC to:
- Address the rapid acceleration of barriers to access due to public policy efforts
- Promote high-value, sustainable health care to legislators and regulators
- Educate NHC members on a variety of public policy issues such as reauthorization of PCORI or the User Fee Acts
Fair Market Value (FMV) Calculator for Patient Compensation
This project aims to support sustainable agreements between stakeholders and the patient and caregiver community as part of medical product development. We will:
- Develop an FMV calculator for compensating patients and patient groups for their work in the development of new treatments. The final product will be a calculator that companies can use and further customize for their own needs.
- Adapt Conflict of Interest Principles for U.S. use
- Adapt contract templates for U.S. use to simplify and standardize the legal process for patient and patient groups for U.S. use
The NHC seeks to identify and implement best practices for integrating the patient voice into medical product development, research, and health-care decision making. We will:
- Produce and submit suggested language for FDA guidance documents
- Convene a dialogue on Clinical Outcome Assessment (COA) including patient-reported outcomes
- Develop a patient-engagement rubric
Personalized Care Management
The NHC envisions a new approach to health care, “Personalized Care Management,” which would focus on delivering to patients the individualized care that is of highest-value to them with minimal barriers. By fusing data and behavioral science, we can better segment patient populations to determine the most appropriate, specific treatment for a specific patient. To explore this concept, we will:
- Convene stakeholders for a discussion of how to tackle fundamental changes to the health care ecosystem that enhance personalized care management
- Publish a white paper outlining next steps from the stakeholder meeting
Patient-Journey Mapping Toolbox
The NHC is focused on ensuring the patient’s journey is collected in a way that informs patient-centric efforts in research, product development, and care delivery. We will:
- Develop a patient-friendly language conceptual model
- Develop corresponding patient-engagement tools and create a user guide
NHC Marque Conferences
- 2019 Science of Patient Engagement Symposium in October provides a rare opportunity for medical and research leaders from patient organizations, nonprofit health groups, and industry to connect, communicate, and network about effective patient engagement.
- 2019 Washington Representatives Retreat in November gathers government relations staff from non-profit members to address strategic, operational, and policy development issues emerging in health care.
- 2020 Health Leadership Conference in February gathers CEOs, Board leadership, and staff from NHC members to address emerging health policy and organizational management issues and how their organizations can best prepare for the future.