How Should Community or Patient Research Partners Be Compensated?

If Research Partners Contribute Real Work, Should They Be Paid?

A patient partner spends two hours reviewing study materials, attends a ninety-minute meeting, and later comments on the interpretation of findings. The academic researchers at the meeting are participating as part of their paid employment. The patient partner is offered a thank-you certificate.

Is that fair?

Community and patient partners may contribute time, lived experience, professional knowledge, local relationships, intellectual work, and sometimes substantial responsibility to research. Yet compensation is often treated as an optional courtesy rather than part of research planning.

The issue is more complicated than simply choosing an hourly rate. Researchers need to distinguish compensation from reimbursement, consider differences in roles and workload, avoid creating financial barriers to involvement, understand institutional payment procedures, and recognize that receiving money can sometimes have tax or public-benefit implications for partners.

Compensation Should Reflect the Partner's Contribution and Circumstances

Fair Compensation Requires More Than Choosing an Hourly Rate

Compensation and reimbursement are not the same thing

Researchers should first distinguish payment for a person's contribution from repayment of costs they incurred because of that contribution.

The distinction matters because reimbursing someone's bus fare does not compensate them for three hours of intellectual work. Conversely, an honorarium may not remove the financial barrier created by travel or childcare costs.

PCORI's current guidance recommends compensation reflecting partners' time, skills, expertise, responsibilities, and project roles alongside reimbursement for out-of-pocket expenses associated with participation.

Partner contributions are work even when the expertise comes from lived experience

Researchers sometimes hesitate to pay community or patient partners because they are not professional researchers. That reasoning overlooks why they were invited.

A patient partner may possess knowledge precisely because they have lived with a condition or navigated a service. A community member may understand local relationships and barriers that researchers cannot learn from the literature. A caregiver may recognize burdens invisible in clinical data.

If a project needs that knowledge, its value does not disappear because it was acquired outside a university.

PCORI currently expects research partners in its funded studies to be compensated and advises that partners should not be expected to volunteer their time or expertise. Its compensation framework similarly starts from the expectation that patients, caregivers, and relevant organizations are compensated for their expertise, time, and contributions.

There is no universal correct rate

Compensation should not be reduced to a single recommended number copied across every project.

Roles vary enormously. One partner might attend a one-hour advisory meeting. Another might review documents, co-facilitate workshops, conduct interviews, join weekly management meetings, analyze findings, and contribute to publications.

Geography, institutional rules, local wage conditions, funder policies, responsibilities, and required expertise also vary.

PCORI does not specify one mandatory amount or form of compensation. Instead, it recommends considering role, level of engagement, time, expertise, responsibilities, project context, and equity across stakeholders and sites.

Compensation should reflect the intensity of involvement

A useful starting point is the work actually being requested.

PCORI's Compensation Framework similarly directs researchers to consider the intensity of involvement based on activities, roles, and responsibilities rather than assuming every form of engagement warrants identical compensation.

Preparation time should not disappear from the calculation

A one-hour meeting rarely requires only one hour of work.

Partners may need to read documents, review questions, travel, complete administrative requirements, prepare comments, or follow up afterward. If researchers calculate compensation solely according to scheduled meeting time, substantial invisible work may remain unpaid.

Teams should therefore identify the realistic time commitment when planning compensation.

Partners should be involved in compensation discussions

Researchers should not assume that the payment mechanism most convenient for the university is also best for partners.

PCORI recommends discussing the type, amount, and frequency of compensation with partners when developing the project budget. Partners may prefer different mechanisms depending on their circumstances, although available options will be constrained by institutional and funder rules.

These discussions can also identify problems before they become expensive or embarrassing. A partner may be unable to accept a particular payment mechanism. Institutional onboarding may require documentation that takes weeks to process. A community organization may need a contractual arrangement rather than individual honoraria.

Payment should therefore be designed with partners rather than revealed after the work has begun.

Compensation can have unintended financial consequences

Money that looks beneficial from the research budget can create complications for the recipient.

Depending on jurisdiction and individual circumstances, compensation may be treated as taxable income or interact with eligibility for means-tested public benefits. PCORI explicitly recommends considering these possible consequences and discussing them with partners so they can make informed choices.

Researchers should not provide individual tax or benefits advice unless appropriately qualified. They can explain the payment arrangement, identify available institutional information, and encourage partners to obtain relevant advice where necessary.

Non-monetary compensation may sometimes be appropriate, but it should not be imposed

Some partners may prefer alternatives to direct payment, particularly when monetary compensation could create unintended consequences.

PCORI identifies possibilities such as educational opportunities, conference registration and travel, or support toward relevant certification requirements when appropriate to partners' preferences and circumstances.

Non-monetary benefits should not become a convenient institutional substitute for payment. A certificate, training session, or lunch is not automatically equivalent to substantial labor.

The partner's preference and the value of the contribution should remain central.

Institutional payment systems can create inequity

Universities and research organizations often have payment systems designed for employees, suppliers, or professional consultants rather than community partners.

A patient partner may be asked to complete complicated vendor forms, submit invoices, wait months for reimbursement, or pay travel costs in advance. These procedures can create barriers even when the approved payment rate itself appears fair.

PCORI's current guidance specifically emphasizes planning internal processes so that compensation and reimbursement occur in a timely and efficient manner and recommends identifying a point of contact for payment questions.

Administrative inconvenience for the institution should not quietly become financial inconvenience for the partner.

Expenses that enable participation belong in the engagement budget

Meaningful engagement may require more than paying people for their time.

Transportation, childcare, respite care, interpretation, translation, accessible materials, assistive technology, internet access, or equipment may determine whether someone can participate at all.

PCORI recommends budgeting for these forms of support alongside partner compensation. This reflects a broader principle: formally inviting someone to participate is not enough if the practical conditions make participation unrealistic.

Fair does not necessarily mean identical

Equal payment for everyone may appear fair, but different partners can have different roles, responsibilities, workloads, and circumstances.

Conversely, large unexplained differences in compensation can reproduce status hierarchies, particularly if academic expertise is automatically valued financially while lived experience is treated as voluntary.

Teams should therefore be able to explain the basis for compensation differences.

PCORI encourages equitable compensation across stakeholders and sites and recommends that compensation arrangements reflect role, engagement level, time, and contributions.

Compensation should be planned before the grant is awarded whenever possible

Researchers cannot compensate partners fairly if the budget contains no money for their work.

Engagement plans should therefore identify expected roles, estimate the time involved, account for support and expenses, and allocate funds before submission when possible.

PCORI's Foundational Expectations explicitly require dedicated funds for engagement and partner compensation in its funded research, and its applicant guidance directs teams to identify engagement resources in the budget justification.

This also matters when research is described as co-produced. Asking partners to share responsibility without budgeting for the work can make claims of equitable partnership rather fragile.

Compensation and authorship solve different problems

Paying someone does not remove the possibility that their intellectual contribution qualifies for authorship. Likewise, authorship does not necessarily substitute for appropriate compensation for substantial project work.

These are different forms of recognition governed by different considerations.

If a research partner contributes substantially to scholarly work, researchers should separately consider whether the partner qualifies for authorship under the criteria applicable to the intended publication.

Budgeting Fairly for a Patient Advisory Group

The important feature is not a particular monetary amount. The process connects compensation to actual contributions, participation costs, partner preferences, and the rules governing the project.

Common Mistakes When Compensating Research Partners

Plan Compensation as Part of the Partnership, Not After the Work

Start by defining what partners will actually do. Then estimate the time, responsibility, preparation, support, and expenses associated with those roles. Compensation becomes much easier to justify when it follows a clear scope of work.

Check current funder and institutional policies before promising a particular amount or payment mechanism. Rules differ, and payment guidance can change.

Finally, discuss compensation respectfully. Payment should recognize a contribution, not create an implication that researchers have purchased agreement. Research partners remain entitled to disagree, criticize the project, or challenge decisions regardless of whether they are compensated.

Before Finalizing Research Partner Compensation

Frequently Asked Questions About Research Partner Compensation

Research Partners Should Not Have to Subsidize the Research With Their Own Time and Money

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