Many of the board members of Rare Disease Foundation play critical roles in advocacy whether it be in improved patient care, increased awareness, networking and bringing together the medical and patient communities for valuable dialogue, raising questions and seeking answers to provide efficiencies, hope and cures. Thank you to all of our board members and other volunteers for their tireless efforts!
As an excellent example Board Chair, Isabel Jordan, recently published a paper entitled “Patient partner compensation in research and health care: the patient perspective on why and how”. The paper focuses on equalizing opportunities for patient involvement in research to provide better quality results.
“As patient and family engagement activity broadens across the continuum of care and expands around the world, the question of compensation for an increasingly competent advisory community continues to come up. The authors are 4 patients who are highly active in patient and public involvement initiatives internationally. Through our exclusive patient perspective, we provide insight into the reasoning and motivation that many patients are now awakening to as to why lived experience is a value that organizations need to recognize and support in concrete ways. We explore the core principles that an organization needs to consider and adopt when developing compensation policies for their engagement practices with patients and family members. Organizations face an ongoing challenge to achieve diversity among their patient advisors so that all segments of the community they serve are represented. In particular, marginalized populations are confronted with financial and social determinants that are often barriers to full inclusion.”
“We know that the topic of compensation (monetary or otherwise) for patient partners and collaborators is relatively new and often novel for all parties involved. It is also not an easy conversation to undertake. This article provides patient and caregiver perspectives related to why compensation for patient partners/collaborators is important, key consideration to consider and how compensation can happen. Given our collective experience as patients and caregivers as partners and collaborators in research projects as well as health care
system projects.” To read the full article click here.