Including and Engaging Patients
Isabel Jordin (@seastarbatita / @rarediseasefdn), Chair and founding member of the Rare Disease Foundation, joined Evening Rounds to give a compelling presentation on the critical need for patient advocacy and engagement in health care.
A personal story
The mother of a child diagnosed with a very rare disease, Isabel is well-acquainted with the many challenges faced by the rare disease community. Enduring years of her son’s “medical mystery tour”, she saw a marked lack of support for families going through the same process. Knowledge of how to navigate the health care system was gained through trial-and-error, but there was no clear way to share that knowledge to help other patients and families. It was through this journey that Isabel saw the need to unite families, clinicians and researchers with the common goal of sharing knowledge and experiences. The Rare Disease Foundation was created to give equal voice to family, researcher and practitioner.
Why patient engagement?
Understanding the health care system and how to advocate within it, and the ability to “pay it forward”, is key to improving both the system and the experience for patients and families. Patient perspectives are vital to this process; without these perspectives, it is difficult to determine where the gaps lie, to identify what patients need.
Steps to engaging patients
Patient engagement needs to be authentic. Patients need to be included wherever possible and in a way in which they feel comfortable speaking their truths and bringing forward their perspectives.
Discussions of what patients need should involve the patients themselves, but often fail to do so. Medical conferences are a prime example of a patient engagement opportunity – patients should be represented in the conference program, on the stage and in the audience. “Patients Included: A Charter for Conferences” was developed for this exact purpose and includes five clauses required for a conference to achieve Patients Included status:
Patients participate in the design and planning of the conference
Patients participate in the conference delivery and are present in the audience
Expenses for participating patients are paid and scholarships are available for delegates
Disability requirements are accommodated
Virtual access is provided for those patients who cannot attend in person
These principles can be applied to other forms of patient engagement, including involving patients on committees and research grants. When recruiting for patient participation, consider what you are asking them to represent and if they feel comfortable enough and supported in their role to speak their perspectives. Advocate for patients needs around accessibility and expenses, as incremental inconveniences can be a barrier to ongoing engagement. Always treat patients as partners, share information and outcomes, tell them how their contribution has been used (or explain why it was not used). And if you want to learn how to foster ongoing commitment to patient engagement – ask the patients themselves.
The discussion that followed touched on a number of points:
Lack of navigation supports in the pediatric hospital system – patients needs to advocate, but agencies also must be willing to act.
Ask patients how they want to be engaged and be willing to meet them where they’re at. Consider the value and benefit of the engagement to the patient (and your own motivations for seeking it).
To meaningfully engage patients, advise what their role is, what the expectations are, how much influence they will have and when they will hear back on the outcomes. Always circle back to the patient to report on the results of their participation.
There are numerous ways to involve patients in research, including:
Developing research goals and objectives
Recruitment of research participants
Co-creation of research grants
Review of and input to research grants