Patient and public engagement

Dear Colleagues,

Those of us who attended the Alberta College of Family Physicians Annual Scientific Assembly had the opportunity to hear Greg Price’s story¹—in short, that of an authentic young man who died from a massive pulmonary embolus soon after a long-delayed diagnosis of malignancy was established. We could all identify with the analysis of the many pressure points in his journey that contributed to the delay. Fostering patient and public engagement (PPE) is one of the 10 recommendations in the Health Quality Council of Alberta’s report that considered this situation.² Patient engagement is currently an important topic of conversation from the local family practice level to regional authorities and provincial government levels. If properly implemented, many believe it could become an example of disruptive innovation in our health care system. The CFPC’s board has instructed the College to examine how it can better incorporate meaningful PPE in its everyday work. So, then, what is PPE? What evidence do we have of its benefits? And what steps must the College take for this dimension to be better reflected and integrated in its activities?

“Patient and public engagement is about having conversations, building understanding and relationships, and using collective wisdom and deliberate dialogue to make durable decisions.”³ Several elements contribute to PPE.

• Health literacy: one’s ability to read or review relevant health information, interpret it, and apply it when making decisions about one’s health.

• Shared decision making: the ability to work with health care providers to consider options for one’s treatment.

• Self-management: the “tasks that an individual must undertake to live well with one or more chronic conditions. These tasks include gaining confidence to deal with medical management, role management, and emotional management.”⁴

• Quality improvement: being able to provide meaningful feedback and input on the overall process of care.⁵

Although much remains to be determined, emerging evidence suggests that PPE results in improved health outcomes, improved patient and provider experience, better financial performance, improved patient safety, better decisions, more effective risk management, more knowledgeable citizens, and strengthened community identity.^6,7

The CFPC has been mindful of the need to hear the patient voice: we have had 3 members of the public on our board for several years; members of the public have participated in the work of some of our committees; patient representatives have been asked to provide feedback on drafts of key policy documents such as our Patient’s Medical Home document; the Research and Education Foundation has 2 public members on its board; our Patient Education Committee has public representation; and the Section of Researchers, through NAPCRG (North American Primary Care Research Group), is involved in a citizen advocacy initiative, and it is including public engagement in its strategic plan. We are currently considering implementing a patient ePanel to enable us to consult the public on a more regular basis regarding issues affecting them and our profession, and the Future of Medical Education continuing professional development project will have a public member as a full decision-making participant in its core planning group.

In reviewing the literature and consulting with those experienced in this area, a few questions come to mind about PPE as it relates to the CFPC. Is having members of the public on our board the best way to achieve PPE? Which committees should include the participation of patients or members of the public? How should we seek such representation? Is this about advocacy or about understanding the patient journey? (I suggest the latter.) How should we do this and ensure that our primary public (our members and family doctors in general) and their patients are well served by this?

The BC Patients as Partners group has shared its important journey (www.patientsaspartners.ca) and provides an interesting way for us to begin thinking about this. At each step, what is the role of the patient or public? What is the purpose of engaging them (to inform, consult, involve, collaborate, or empower)? How will the input be used? What promises can we make to our stakeholders?⁶

I want to think of PPE as “an opportunity to be explored” not a problem to be solved; I hope that we can “support the development of organizational capacity for PPE.”⁶ We look forward to the input of the Governance Advisory Committee, Executive Committee, and board, and you, our members, as we become more deliberate in this journey.

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