By Dolly Menna-Dack
With evidence that supports the engagement of health system users, the changing expectations of pan-Canadian regulatory and granting agencies, a new role in the healthcare system has emerged – the Patient Partner. Across health and research systems Patient Partners are a recognized as important stakeholders and collaborators in co-design. The Multidimensional Framework for Patient and Family Engagement in Health and Health care, developed by Carmen et al outlines the levels of engagement: Direct, Organizational, Systems and the continuum of engagement: Consultation, Involvement, all the way to Partnership and Shared Leadership.
While there might be varying degrees of active patient partnership at the local level, it is widely accepted as a best practice. Take for example the change to Accreditation Canada’s standards, released in 2016. The new standards reflect an explicit change that highlights that patient engagement is an expectation for health care across Canada.
The primary qualification of a Patient Partner is in having experience of being an individual who has received care/ participated in research themselves, or has acted as caregiver to an individual engaging in one or both of these activities. Requirements or qualifications beyond this are often determined at the local level where Patient Partners with particular experiences in health care or research may be sought, organizational training provided, education sessions delivered, and registration in a patient partnership program may also be necessary aspects of the role.
Compensation has become a hot topic in the world of patient partnership. There are well known groups and institutions that can be looked to for guidance on this. In Ontario, The Change Foundation has created a tool, Should Money Come into it? to aid in decision-making around whether a Patient Partner should be paid, and in the United Kingdom, INVOLVE, funded by National Institute for Health Research, has many resources to support those wanting to include Partners who are paid in aspects of research projects. It is also clear from the literature that there is a belief and recommendation that Patient Partners should not be spending their own money in order to participate in partnership activities. The recommendations range from covering “typical” costs like parking and providing refreshments all the way to covering costs which include things like child care, and personal support assistants to remove barriers to participation.
There are many papers devoted to why Patient Partners should be compensated, suggestions for how, and how much. One paper, authored exclusively by a group of such individuals entitled, Patient partner compensation in research and health care: the patient perspective on why and how focuses on why compensation is important. The need to explore payments and other barrier-removal offerings is clearly important when working with patient partners, however after reading this and so many other papers, as well as working closely with Patient Partners, I cannot help but wonder if compensation is just not the right word for recognizing the work of Patient Partners.
Compensation has two important dictionary definitions; firstly it “typically refers to money awarded to someone as a recompense for loss, injury or suffering,” and it is also understood to mean the money received by an employee as a salary or wage. Frankly neither of these definitions seem appropriate when attempting to recognize or value a Patient Partner’s contributions. Although a clear line can be drawn between the desire to ensure that Patient Partners are not out-of-pocket for expenses related to their own participation in health care and research collaborations, it is not in this vein that “compensation” is generally understood. Instead, authors like Richards, et al (2018) believe that there is a difference between a Patient Partner receiving an “expense payment” and a “compensation” payment. And if compensation is typically viewed as a recompense for loss or suffering, are we suggesting that we are hoping to compensate Patient Partners for sharing “their expertise (which is) often based on very personal, sometimes emotional stories and experiences” (Change Foundation, 2019)? It does not seem possible that we could ever be in the position to suggest that recompense is needed, nor could we ever understand what could be appropriate to offer or provide; it is beyond the scope of the partnership between system collaborators and Patient Partners.
Patient Partners function in volunteer roles, not as staff receiving a regular salary. Therefore the term compensation adds another layer of confusion to the realm of Lived Experience Roles because there are a number of paid roles in the system. While possibly less well known, these roles seek to embed individuals with lived experience as regular team members, like CAMH’s Peer Support Worker and Holland Bloorview Kids Rehabilitation Hospital’s Youth Facilitators. These regular staff roles, along with funded Patient Advisor roles clearly offer compensation – a salary or wage – the way other traditional roles in the system do.
If we start from the premise that volunteer Patient Partners are necessary stakeholders that bring invaluable insights to the co-design process, then we must continue the conversation of how to offer cover out-of-pocket expenses and how to talk about demonstrating the value of the Patient Partners. A term that is already in use for this use for this purpose and utilized broadly in society is “honoraria.” The strength in the term honoraria is that it is openly acknowledging that the amount of money provided is not reflective of the value of the work that has been done, but rather viewed as a way to say thank you (Ryerson University, 2019). This simpler term carries an important message to Patient Partners: your lived experience contributions are invaluable, and we thank you.
Dolly Menna-Dack, MHSc is a Clinical Bioethicist at Holland Bloorview Kids Rehabilitation Hospital.