Involving citizens in health care decisions is vital for a number of reasons. As voters, taxpayers, citizens and recipients of care, they can contribute vital input regarding their priorities for, and needs from, the health care system.
The citizen perspective is invaluable in shaping the role and place of social values in decisions about our health care system. And it is complementary to Patient Engagement, which can provide the lived experience of patients and their priorities. Even though citizens are all patients at some points in their lives, in citizen engagement individuals are called on to wear a citizen hat and to think about what is important for the public good.
Compassion vs. Efficiency vs. The Public Good
Decisions regarding resource allocation are often fraught with tension because of competing values. Do we fund costly treatments for diseases that are rare, but devastating, or do we prioritize funding for less harmful illnesses that affect a larger subset of the population? Should we devote greater funding to reducing the cost of more expensive drugs, or fully cover less-expensive treatments?
In making decisions such as these, we need to balance diverse interests and priorities. Citizens’ perspectives offer tremendous insight here by highlighting the values considerations behind the issues and deliberating on the tensions between them that an issue might foster. For example, weighting compassion alongside considerations of cost-efficiency. This allows us to identify the ways forward that are at the intersection of our greatest priorities and values.
‘Toward A Values Framework’
Here is a terrific example: The Ontario Ministry of Health and Long-Term Care has established a Citizens’ Council. It is mandated to provide advice to the Executive Officer of the Ontario Public Drug Programs on the values that reflect the needs, culture and attitudes of Ontario’s citizens about government drug policy. This Citizens’ Council was established with the assistance of One World Inc, and we have designed and facilitated Council sessions from its inception into the present.
Over the course of several sessions, the Council has developed a Values framework that helps to inform the Ontario Public Drug program on an ongoing basis. This Framework is a work in progress and its current form can be found in the Council’s report, “Toward a Values Framework” (publicly accessible on the Ministry’s website ). The following is a graphic representation of the current framework:
The framework developed by the citizens expands on the meaning of these values and notes that they are all social and/or ethical values, not personal ones and all are important when determining policy for the Ontario Public Drug Program. However, the Council recognizes that there can be tension between values and therefore the Framework underlines the importance of context, noting that that the values need to be considered and deliberated on in the context of the particular issue at hand. For example, depending on the issue, one value may be more important than another but the opposite could happen in another case. However, even given this, it has been possible for the Council to begin to develop some principles of application. Key to this is the notion of balance – perhaps another value in its own right.
Two principles have emerged to date:
Balance the common good with the needs of particular individuals
The government has a mandate to serve all citizens, including those with special needs, but for the benefit of all it must provide prudent management of available resources.
Balance evidence-based decisions and compassion
When making effective drugs accessible for compassionate reasons and when normal evidence standards cannot be met, programs should encourage the collection of real-life data to advance the overall evidence base and medical knowledge.
The Framework is important from several perspectives:
- It assists the Citizens’ Council by providing common language for the Council’s deliberations and lending consistency to its recommendations when it deliberates on particular issues.
- For the Ontario Public Drug Program, it can provide identifiable and consistent evidence and values-based reasons to make decisions defensible.
- For the public, it can provide a rationale for funding decisions that considers both evidence and values important to citizens.
The Council is a tremendous resource and decision-making tool for both citizens and government in trying to balance diverse (and often competing) values and priorities. It demonstrates that citizens have what it takes to wrestle with and work through the tough and complex issues our society face, including the challenges of providing health care for all —if they are engaged in a meaningful way – e.g. given the appropriate process, credible and balanced information and an opportunity for real influence.