COMPENSATION FOR ENGAGEMENT

Experiences in Compensation for Patient Partners:

  • This "Lead" position in a MH Trust is at Band 3 ie starts below 18k. This is a post that requires "lived experience". Why does having "lived exp" seem to reduce salaries so spectacularly? (@allyc375)
  • The 'I'm sorry I couldn't plug your meter because my husband was being moved from ER to cardiac ICU at the time' worked, although I had to listen to a 10 minute speech on how parking fees work and why they're needed. I got the $25 back, though. (@BCampbellDuke)
  • Providing honorariums for doctors speaking at conferences but patients receive nothing. (@BrianDonnaPenn1)
  • Quotation from letter asking if I would join an advisory committee: "We will offer an honorarium to offset the expense for gas and travel to attend these meetings.” Out of pocket costs are expenses/reimbursement, not an honorarium!! (@couragesings)
  • Nice to know #pts are valued so much their contributions are priceless (as in, no price shall be paid for their inv… (@couragesings)
  • Oh wait - there’s more: letter says honorarium will be offered to cover expenses. Ughhh...that is NOT an honorari… (@couragesings)
  • Do not cover the out of pocket expenses for #pts. (@couragesings)
  • Fail to include in your budget the costs for #pt engagement. Then say you can’t do #pt engagement b/c there’s no budget available. (@couragesings)
  • Hold your meeting over lunch. Do not provide any food. (@couragesings)
  • Cover out of pocket expenses for #pts -- things like mileage, childcare etc. Find out from #pts what supports are needed. (@couragesings)
  • Discuss matters of compensation for staff in front of #pts. Helps make us *really* feel like a valued member of the team, especially being the only unpaid member at the table. Have the awareness how uncomfortable this makes the only team member not paid & have this conversation elsewhere. (@couragesings)
  • Pay for expenses & full registration in advance. Follow the principles of #patientsincluded (@couragesings)
  • Cover expenses for #pts - yes, this means meals, too! #pts should not be out of pocket & paying for the privilege to participate. (@couragesings)
  • “Scholarships have been already awarded to #pts. No, our process was not public or transparent. Secrecy is our motto!” (@couragesings)
  • Please - make scholarship info public. Otherwise, scholarships are only distributed to the 'chosen few' #pts while other #pts wonder how to take part in your conference. (@couragesings)
  • Say you offer compensation for your #pt partners. Who knew reimbursing travel costs was considered ‘compensation?’ (@couragesings)
  • Reimbursement of out of pocket costs = covering expenses, not compensation. Compensation is something given after expenses have been covered, & it may look differently for each #pt. (@couragesings)
  • If there are scholarships available, be transparent about the availability and include public info on how to apply. (@couragesings)
  • Include in the guidelines for your group how others will be paid for their participation. Do not offer the same courtesy for #pts. Working for free when everyone else is being paid makes things equitable. *sarcasm* (@couragesings)
  • #HowNotToDoPtEngagement: expect #pts to offer free labour to your project. (@couragesings)
  • How many times do I need to say this: #pts should not pay for the privilege to do #ptengagement. This means covering expenses at minimum. This does not mean #pts can only ask for mileage if they reach a magic number, no matter how small. (@couragesings)
  • After all, it’s best to weed out those pesky #pts that cannot afford to participate unless there is compensation by not telling them they will be paid until the project is over. Bonus: then you can complain about the lack of diversity in your #ptpartners! (@couragesings)
  • #HowNotToDoPtEngagement: when offering compensation, make it a surprise! Don’t let your #ptpartners know compensation will be offered until the end of your project/meeting. And make sure to ask everyone what amount they’d like while in the presence of other #pts! (@couragesings)
  • Sign up for e-transfer to reimburse expenses. Receive cheque in mail. (@couragesings)
  • #HowNotToDoPtEngagement: update things with regards to your expense policy, but do not let the #pts on your team know about these changes. They don’t need to know. It gives them practice at finding discrepancies & sending emails. Who’d want to miss out on THAT opportunity?! (@couragesings)
  • When a #pt asks to pay for hotel costs in advance, this is a basic premise of #ptengagement: #pts should not be out of pocket for costs that can be paid up front. And no, the answer is not to advise to just call-in instead. (@couragesings)
  • If a #pt asks you the budget for hotels, keep it a secret. They can’t handle the truth. After all, why would we give information that could help them find hotels within your budget?! (@couragesings)
  • #HowNotToDoPtEngagement: don’t budget for the compensation of study participants. Say there is no money, but somehow find money only for your needs. (@couragesings)
  • I’ve been accepted to speak at an international conference in Paris on high risk pregnancies. The catch. I need to pay my own travel AND register for the conference. How are patient voices going to be heard when the costs are so high? (@CynthiaLockrey)
  • Support People With Lived Experience (PWLE) to get to the table; travel expenses, accommodation and honoraria. (@DeborrahS)
  • and even if the patients are paid, the docs will be paid far more (@drlfarrell)
  • ask patients to volunteer their time to give feedback, rather than pay them. (@GenCounsNews)
  • Researchers who claim the maximum amount of funding each year for conference travel for themselves but don't include honorariums for study participants - yes, I have a problem with your budget. (@GERONursing)
  • Asking for free advice in exchange for maybe a cup of coffee. (@gilmerHealthLaw)
  • Asking to test your beta product and the "compensation" is getting to test the beta product. (@gilmerHealthLaw)
  • Compensate patients? We don’t have a budget for that. (When you don’t compensate, only the individuals who have the time, means, transportation, childcare, eldercare, etc, will engage. Compensate fairly to include all.) (@graceCordovano)
  • "I can no longer afford to be 'honoured' by any more medical conference invitations" - invite patients to speak at your big event, but withhold any travel/hotel/per diem support (@heartSisters)
  • When everybody attending the project meeting you finally invite a patient to attend are paid to be there (some you've even flown in and put up in a nice hotel the night before) but you don't offer to pay your patient's parking (@heartSisters)
  • When you finally realize you haven't yet included any actual patient input in the new patient website your ad agency is creating for you, and after that patient spends 90 minutes correcting obvious errors on your site, you give her a $5 Tim Hortons card (@heartSisters)
  • Today I turned down a consumer rep role on a very high level governance committee for a big infrastructure and service design project because consumer reps would not be paid. My work is casual, time off means no pay. Your project is very interesting but a girl's gotta eat. (@laqwalsh)
  • Announce loudly that all who need transit tokens should follow you up to the 2nd floor (@PatientAdvisors)
  • Of course they could offer patients and caregivers a deep discount if they can induce friends or acquaintances to attend - like a pyramid scheme. (@PatientAdvisors)
  • A chance to win a $50 Amazon gift card doesn’t pay for my parking and sitter to be here. (@RaeofSunshine79)
  • Pay for doctors to speak at conference but do not pay for patients to speak at the conference (@ThePatientsSide)
  • Invited to speak at #CancerScience2019 in Spain, but cannot afford travel expenses (estimated $2000). They waived the $500 reg fee & will not cover anything else.…(@TCOrobin)
  • I worked on a project where we had to argue with big city funding body that our small city project had to rethink travel because “city =/= public transit”. They literally told us that wasn’t possible. We ended up proposing home visits. (@trishpaton)
  • When asked about support for child care, everyone in the room gives puzzled look and says “why”? (@trishpaton)
  • When working with people who don’t have cars, don’t check transit routes or provide for taxi chits. Have meetings where it’s convenient for you (hospital) and be surprised when they show late, only once, or not at all. (@trishpaton)
  • Spinning off this...make patients ASK about having costs covered, especially in the group, so they can feel on display and like they’re imposing. (@trishpaton)

Compensation for Patient Engagement

Should Patients Be Paid?: "Organizations often send the message (intentionally or passively) that the reward is the warm fuzzy feeling of helping others, or possibly even helping yourself by funding research that could cure your disease. What monster would demand compensation for that?" (@CarlyRM)

The cost of patient participation: Outlines costs of patients' expertise and value; author relays own experience and rationale into accepting speaking invites to inform those planning to make similar asks of patients, or to accept asks from organizations to speak. (@danamlewis)

My Open Letter to Patients Included Conferences: Identifies the problems with assuming your conference invitations to "patients" are working - mainly, that they may not be actually getting the sick people to attend (due to lack of compensation for time, contributions, expenses, etc.) (@HeartSisters)

Ratty boxers: what it means to really, truly have no money: On the importance of financial support for patient partners' advice, expertise and sharing of experiences, and to address the stigma that poor patients = not intelligent or capable (rather than, those who are unfortunately more experienced in the system and thus have more costs to outlay) (@ePatientDave)

Compensation Guidelines and Resources

  • @CDCofBC: A Guide for Paying Peer Research Assistants includes useful flowcharts for decision-making and details of when and how to pay assistants; Peer Payment Standards for Short-Term Engagements shares a set of standards for short-term engagements; advises teams to be upfront about payment; provide options; to pay cash; to cover other costs; and to discuss income and/or disability assistance (so that other benefits would not be clawed back). Advises to hire patient as employee if long-term engagement is sought.




  • PCORI: Financial Compensation of Patients, Etc., Engaged in PCORI-Funded Research as Engaged Research Partners quickly outlines of PCORI's position on compensation for patient research partners, including building in flexibility, planning and budgeting for engagement, and adjusting compensation level relative to the contribution made (varying from informing partners to active decision-makers on the team). Budgeting for Engagement shares several considerations to make in planning a patient engagement component and associated budget for your research, including compensation for committee work, document/proposal review and feedback time; makes suggestions of items to include in a potential budget