Canadians worry about access to health care, the cost, and the quality. The cost issue is important because about 50 per cent of government program spending is on health care. Quality issues are important because of the unacceptably high rate of preventable mistakes leading to death, disability and discomfort.

Recently, Nova Scotia’s Department of Health supported an advertisement campaign with the theme “Time to Speak Up: Make Sure Your Voice is Heard.” The campaign is an appeal to encourage citizens to participate in their own healthcare and the development of health policy.

Citizen participation in health policy and health care is important.

Patients are the most interested member of health care teams, and their services are free. When patients and their doctor receive laboratory test results the patient is a second set of eyes making sure that abnormal results are not ignored. Patient participation in their own care can reduce the amount of clinician time required to care for a problem by reducing the number of necessary face-to-face clinical visits, leaving doctors more time to spend with patients who need more guidance.

Unfortunately, patient participation is stymied by a series of barriers. Many patients have low health literacy. They may not know enough about science, biology, statistics and anatomy to enable them to ask basic questions of their care providers. Most people lack the knowledge to evaluate the large pool of amateur advice and incorrect information available on-line.

Even those who are health literate are stymied because information about the potential benefits and harms of care is difficult to find. Important medical research is often hidden behind paywalls, and today many patients have difficulty gaining access to their own health information.

Participation in health system reform is difficult. Ordinary citizens and governments continue to operate in the dark because there is a shortage of useful information about health system performance. Citizens are unable to get complete and timely information about waiting times for care, the results of care, or the rate of preventable mistakes in their local health facilities.

In May, the Atlantic Institute of Market Studies (AIMS) convened a forum to discuss citizen participation in health care. People came from many disciplinary backgrounds including medical practitioners, former civil servants, business people, researchers, policy experts and consultants, and academics from philosophy, history and English.

The participants enthusiastically supported the principles that patients should have access to information about their own health, including timely access to laboratory reports, information about their personal risk factors, and general information about health and health system performance. The forum recognized the importance of supporting communication between clinicians and patients using modern tools including e-mail and the telephone.

The forum agreed that ordinary citizens must also have accurate information about health system performance, including information about waiting times, the benefits and harms of interventions, and error rates to make thoughtful personal and political choices.

In addition, the forum supported the notion of increasing health literacy through campaigns conveying clearly the most important concepts in healthcare, helping the public to focus on fundamental questions such as the purpose of health care, the measurement of results and the crucial issue of evaluating the likely benefits and harms of proposed treatments including in mental health and the evaluation of public health initiatives.

The way forward in a most immediate actionable ways would be to promote improvements in health literacy, granting patient access to their own information, and granting public access to information about health system performance.

There are many solutions from other industries that can enable people to access health information as easily as they can access information about their own bank account, and the performance and safety of the banks they use.

AIMS intends to do its part in greater health literacy by organizing public forums to discuss these important topics, including the 7 important ideas that people must understand to participate in their own health care and understand health system performance. The first public forum is scheduled for October 13 at the Halifax Public Library.

Jeffrey F. Collins, David Zitner, and Marco Navarro-Genie are research associate, senior fellow in health-care policy, and the president, respectively, at the Atlantic Institute for Market Studies (