Medical treatments are usually helpful, but sometimes they can be harmful or a waste of time and money. Consequently, following medical advice represents a gamble, with doctor and patient betting that tests and treatments are more likely to help than harm.
The Commonwealth Fund, a private foundation that aims to promote a high performing healthcare system, reported that a majority of Canadians are not active participants in their own care even though engaged patients were found to be happier with their care and more likely to participate in disease prevention, health screening, and health promoting activities. Recently, collaboration between the Atlantic Institute for Market Studies, the Nova Scotia Cooperative Sector and faculty at Dalhousie University organized a series of workshops to learn what is necessary to support citizen participation in healthcare and in health system governance.
Participants, from health experts to the general public, recognized that patient participation is stymied by a series of barriers because 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 online.
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 still have difficulty gaining access to their own health information.
Ordinary citizens and governments are also left in the dark because there is a shortage of useful information about health system performance. Citizens are unable to get timely information about waiting times for care, the results of care, or the rate of preventable mistakes in their region.
Participants in the public and expert workshops supported the principle that patients should have access to information about their own health, including timely access to laboratory reports, and information about their personal risk factors. The forum recognized the importance of supporting communication between clinicians and patients using modern tools including e-mail and the telephone.
Workshop contributors agreed that ordinary citizens must also have accurate information about health system performance, including information about waiting times, the benefits and harms of tests and treatments, and error rates so that they can make thoughtful personal and political choices.
My experience as a clinician, work in academics and health policy, and as chair of hospital quality, utilization and health record committees is consistent with the reflections from our workshops. Patients who participate in their own care can avoid unnecessary mistakes and accelerate worthwhile care. In order to actively participate in care, patients must understand several simple ideas. In particular people should:
- be able to outline what they expect treatment to accomplish;
- understand how diagnoses are considered and confirmed, especially of obscure problems;
- understand the meaning of test results, including the chances of false alarms and false reassurance;
- understand when screening tests for conditions such as breast or prostate cancer are most likely to be helpful or harmful;
- understand the principles guiding treatment-What information is necessary for clinicians and patients to decide that a treatment is more likely to help than harm;
- have easy access to their own health reports.
Recently, the Nova Scotia department of health supported an advertising campaign with the theme “Time to Speak Up: Make Sure Your Voice is Heard”. I agree. Citizens must be active participants in their healthcare.
David Zitner is a retired family physician.