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“What is interesting about having patients at the table is that …they are not aware of the elephant in the room and so they ask the questions that have to be asked.” – Kathleen Peterson
To help launch its new theme of Patient Engagement, the Canadian Health Services Research Foundation (CHSRF) sponsored a panel discussion on May 11, 2010 at the Canadian Association for Health Services and Policy Research conference, held in Toronto. The panellists were:
- Dr. Marie-Pascale Pomey, Associate Professor, Department of Health Administration, Université de Montréal
- Sholom Glouberman, President, Patients’ Association of Canada and Director of the International Master’s Program for Health Leadership at McGill University
- Kathleen Peterson, Director, Health System Planning and Policy, and First Nations and Métis Health Policy, Policy and Planning Branch, Saskatchewan Health
- Nancy Lefebre, Chief Clinical Executive and Senior Vice President of Knowledge and Practice, Saint Elizabeth Health Care
Diane Gagnon, Director, Patient and Citizen Engagement at CHSRF, acted as panel moderator.
Patient-centeredness — a concern for, and responsiveness to patient preferences — is believed to be a key component of quality health care, Gagnon said in her introduction. However, very few organizations in Canada systematically engage patients in various levels of decision making. Canada lags behind both the United States and the United Kingdom when it comes to exploring patient engagement concepts and principles. Thus, the purpose of the session was to “help get the discussion going.”
Gagnon posed three questions to the panellists:
1. What is patient engagement?
2. What are the barriers?
3. How can it be facilitated?
Highlights
There was a general consensus about the importance of increasing patient engagement in healthcare and about the challenges involved. Participants identified some key issues:
- the healthcare system is not structured to include patients from participation at the organizational level, and so it is challenging to make the necessary changes to include them
- when patients do serve on health care committees, they typically are given little or no training and support
- patients typically spend only a short time in acute care and therefore don’t have a long-term relationship with the care providers or institution
- healthcare providers need to be given tools and resources so they understand the importance of patient engagement and ways to engage patients
- expectations for patient engagement must be set so providers can be held to account
- patient satisfaction surveys may not be measuring the right things
- fee-for-service payment for physicians can create disincentives to patient engagement and
- patients usually feel vulnerable if they challenge healthcare professionals
Several speakers noted that “patient” engagement really means family involvement. “Patients are always in an envelope with family,” said Sholom Glouberman. There was some discussion of whether a culture shift was needed among healthcare providers — for example, from a culture of gatekeeping to a culture of sharing — or simply new ground rules (“you can’t be rude to patients”). Other issues that were explored included the usefulness of patient charters and a perception that, within the healthcare system, quantitative research is valued far more than qualitative research, though the latter captures more of
patients’ lived experiences.
