Posted on December 20, 2021

New NEHI Report Proposes Five Principles for Trustworthy Communication Between Patient Communities and Health Care Payers Regarding Payer Decision-making on Novel Therapies

NEHI - The Network for Excellence in Health Innovation released a report today that proposes five principles of communication for shaping future exchanges of information among patient groups and U.S. health care payers to enhance and promote trust in payer decision-making on coverage of novel therapies. The principles are based on findings from a conference among patient and health care payer leaders held in July 2021, which was made possible through support from the Patient Centered Outcomes Research Institute (PCORI).

Project Leader Tom Hubbard of NEHI stated, “We found an emerging need for communication among patient communities and payers as multiple novel therapies are launched with FDA approval every year. As of now there are few programs or processes in place in the U.S. health care system that facilitate systematic communication among patient groups and payers at the point when new therapies are approved, and payers must make decisions on coverage and utilization management.”
“The patient and payer leaders we convened in July generally agreed that it will be very challenging to create systematic channels of patient-payer communication in our highly fragmented health care system. Nevertheless, new programs and processes are evolving, including patient engagement programs launched by some payers and by health technology assessment organizations. These programs will evolve further in the next few years. By disseminating our principles of communication, we will help shape patient-payer communication so that it is trustworthy and, we hope, patient-centered and evidence-based,” Hubbard added.
The five principles are:
  1. Trust, empathy, and transparency in communication from patient groups and health care payers to each other. These values can be made concrete through adoption of clear standards of transparency in governance and funding by patient groups, and payer adoption of principles of transparency in decision-making on patient access, formulary design, insurance benefit design, and utilization management.
  2. Representativeness, defined as communication from patient groups that is representative of authentic patient and caregiver experience, and representative of the real-world diversity of patient populations. Payers should be capable and willing to acknowledge authentic and diverse patient experience.
  3. Shared focus on evidence and commitment to collaboration on evidence: Patients and payers may have initial disagreements over access to a new therapy, but they share an interest in its effectiveness. Patient-payer communication that is focused on evidence, filling evidence gaps, and collaboration on real world evidence will build trust among patient communities and payers.
  4. Shared focus on total costs of care: Payers have a vital interest in overall costs of health care; management of total costs of care is a key principle in ongoing payment reforms. Patients and caregivers are experts in navigation and management of their conditions. A shared patient-payer focus on communication regarding the potential impact of novel therapy on total costs of patient care will build trust.
  5. Timeliness: Health care payers face strict timetables for decision-making. Few processes are in place that systematically enable advance communications from patient communities, but timely communication is an important goal for future communications and will support trustworthy exchange of information.
In addition to outlining the five principles of communication, the NEHI report summarizes key challenges and barriers to operationalizing systematic and trustworthy exchange of information among patient communities and payers. Wendy Warring, CEO of NEHI noted that, “The most important next step, and a key goal for NEHI, will be using these principles of communication to help patients, payers and other stakeholder groups to build reliable channels of communication. These will ensure that patient voices are heard in payer decision-making, and payers make well-informed and timely decisions on coverage of novel therapies.”
The NEHI report (“Principles of Trustworthy Communication Among Patient Communities and Health Care Payers Regarding Novel Therapies”) is a conference summary from the NEHI Conference on Novel Therapies and Patient-Payer Communication, a virtual meeting held on July 27-28, 2021, with over 50 key opinion leaders from patient groups and health care payer organizations. The NEHI project on patient-payer communication is supported by a funding award through the Eugene Washington PCORI Engagement Awards program (EAIN-19981, “Developing Principles of Communication Between Patient Communities and Payers Regarding Novel Therapies.”).
Principles of Trustworthy Communication Among Patient Communities and Health Care Payers Regarding Novel Therapies can be viewed and downloaded here.

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