Patient engagement in health care appears to be entering a new phase. The question for many providers and researchers is now, “How can we best help patients become more active participants in health care?â€
The most recent addition comes from the Belgian Healthcare Knowledge Centre. They ran a Delphi survey and produced a report called Models for Citizen and Patient Involvement in Health Care Policy, Part I: Exploration of their feasibility and acceptability. The study recognizes that:
Today, in Belgium, a deliberation-driven model of decision making incorporates several stakeholders (i.e. scientists, sickness funds, pharmaceutical industry’s representatives, medical and health care institutions representatives, political representatives) in a deliberative appraisal committee. It is assumed that by this means health care policy decisions reflect public values, without involving patients or citizens directly (6).
This is in fact the way most policy decisions have been made in Canada until now, although things are beginning to change here as they are in Belgium. The paper continues:
The interests [of patients] are supposed to be defended by the stakeholders currently already involved in the decision-making process. It remains unclear, however, how this representation of societal and patient values then takes place, in the absence of a structured consultation or deliberation with the citizens and patients (6).
In Canada major policy decisions about health care do not typically have patients or their representatives at the table. At the Patients’ Association of Canada, we believe that patients should be enabled to speak for themselves. This would not only avoid questions about who is speaking for them. More critically, it would add a fresh perspective to these debates. We have found that the patient and caregiver point of view is often absent in the design of services, the development of policy, and the decisions about meaningful health services research. Having patients at the table can shed new light on many systemic problems and help to improve healthcare.
But it will not be an easy task to introduce the patient voice into the system.
Public and patient involvement is a social process, not a discrete intervention. It requires an on-going commitment from all stakeholders to build mutual trust and meaningful communication. Therefore, any public and patient involvement initiative should evaluate its effectiveness in terms of both processes and outcomes.
A major ongoing effort of the Patients’ Association of Canada is to articulate a series of Key Performance Indicators of a patient centred health care system. We are basing the indicators on patient narratives. We gather them in conversations, open meetings, online sources, surveys, and wherever else indications of patient experience occur. They provide the perspective that is needed to identify issues that patients and caregivers face in the health care system and also ways to resolve them.
Reference:
Christiaens W, Kohn L, Léonard C, Denis A, Daue F, Cleemput I. Models for citizen and patient involvement in health care policy - Part I: exploration of their feasibility and acceptability. Health Services Research (HSR).Brussels: Belgian Health Care Knowledge Centre (KCE). 2012. KCE Reports 195C. D/2012/10.273/105.