Fair Pay for Patient Engagement: Navigating the Evolving Landscape of Remuneration
Nicole Wicki
Patient Focused Medicines Development

atient engagement across the medical innovation lifecycle has accelerated rapidly in recent years. The depth and breadth of patient engagement activities are flourishing, with increasing efforts around fit-for-purpose product development, Patient Experience Data, and value for patients who have the most to gain or lose from medical innovation and access.

Whether to remunerate patient partners for their time dedicated to patient engagement (PE) activities has become a moot point. There is consensus, at least among commercial stakeholders such as pharmaceutical companies, that patient partners should be offered payment when it is permissible. However, a lack of global standards has required the life sciences industry stakeholders to co-create solutions for patient interactions. In response to collective calls to action, Patient Focused Medicines Development (PFMD) built upon previous collaborative work with the National Health Council (NHC) and the Workgroup of European Cancer Patient Advocacy Networks (WECAN) to outline practical solutions that support PE partners in navigating remuneration and in effectively applying fair market value (FMV) rates.

Compliant and ethical remuneration hinges on FMV to safeguard independence and prevent inappropriate influence. FMV rates mitigate risks of underpayment and its implications on how a company values the time and expertise of patient communities. However, it is not always entirely clear what FMV is and how to utilize it with patient partners. FMV typically has abstract definitions1 that are not explained in Codes of Conduct, leaving laypersons perplexed.

PFMD’s ad hoc analysis of the landscape of FMV and remuneration revealed that FMV base rates or ranges for patient partners vary considerably2. This causes frustration for both sides and can impede meaningful collaborations. However, while each life science company may have (and, for reasons of competition, should have) internal FMV rates, if or how the rates are used or adapted also varies. Previous efforts from the National Health Council focused on actual FMV rates and on co-developing a US market-based methodology that can be replicated in other markets. However, the actual rates are a side issue; a core element in fair and transparent remuneration is the alignment on standards with which existing FMV rates can align.

Some companies have opted for a “type of participant” approach, often differentiating between individual patients, patient organization representatives, and/or patient subject matter experts. This lends itself to traditional FMV approaches developed for use with healthcare professionals based on one’s individual area of expertise. However, given the heterogeneity of patient community partners, this approach can fall apart or even impose unnecessary discrimination. For instance, if someone is deemed an “individual patient,” the corresponding FMV rate ranges may be lower than for other types of participants, yet the activity they are taking part in could be deemed relatively advanced. These scenarios then raise questions of discrimination and fairness.

A solution to this conundrum is to focus on the complexity of the patient engagement activity and the expertise required for the task(s). Although explicitly stated as a factor in PFMD’s Global Remuneration Principles, EFPIA guidance, and some national associations’ positions, a systematic approach to evaluating the expertise required for patient engagement activities has yet to emerge.

The co-created Fair Patient Engagement (PE) Planner applies activity and expertise frameworks to support patient engagement partners in defining the expertise required for activities and enables dialogue for partners to mutually agree on a fair hourly rate of pay in the context of a company’s existing FMV rates. This promotes open and transparent dialogue to define activities and pay, effective participant matching, and good patient engagement practice. While companies lack the ability to align on the actual rates of pay, the systematic standards applied in the Fair PE Planner provide consistent documentation to justify FMV rate adjustments. Risks are therefore mitigated, and trust can be cultivated between partners.

PFMD has convened a community of PE champions representing patients and various functions from pharmaceutical companies to utilize the Fair PE Planner and put this novel approach to use. This open, collaborative community shares learnings and identifies opportunities and challenges in utilizing an expertise-based approach to fair remuneration; get in touch with PFMD to get involved.

Standards for fair remuneration are long overdue, and we as a patient engagement community can learn from each other in using the tools at our disposal. The valuable insights garnered can drive progress and can be extended to public bodies and other patient engagement stakeholders. Deconstructing the black box of FMV and fair remuneration requires open dialogue, trust, and transparency and cannot be done in isolation. Let’s continue to make progress together.

For more information on the PFMD Fair Remuneration project and tools or to get involved in the Fair PE Planner implementation community, please contact nicole@thesynergist.org. Visit the PFMD Patient Engagement Management Suite to explore tools to support remuneration, contracting, and navigating national Codes of Conduct at pemsuite.org/fmv.
1 See U.S. Physician Self-Referral (“Stark”) Regulation (42 CFR §411.351).

2 An ad hoc confidential survey involving pharmaceutical and patient organizations demonstrated a difference in reported hourly rates, with ranges varying on average by a factor of 4. Confidential survey data from commercial FMV data providers illustrate an even greater gap in country FMV ranges.