In the Chronicle Herald, AIMS Senior Fellow for Healthcare David Zitner explains how patients are often stymied from adequately participating in their own healthcare. Many people are medically illiterate; others cannot navigate between informed medical opinion and amateur advice available online. His article promotes the upcoming AIMS Health Literacy Forum.

The patient's wager

Medical treatments are usually helpful. Sometimes they are harmful or a waste of time and money. Consequently, following medical advice represents a wager. Doctor and patient are betting that tests and treatments are more likely to help, not harm.

The Commonwealth Fund reported that a majority of Canadians are not active participants in their own care; although engaged patients are happier with their care and more likely to participate in disease prevention, health screening, and health promoting activities. Collaboration between the Atlantic Institute for Market Studies, the Nova Scotia Cooperative Sector, and faculty at Dalhousie University led to a series of workshops of health experts and the general public. The workshops were organized to learn what is necessary to support citizen participation in health care and in health system governance.

Participants recognized that 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 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 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 Nova Scotians 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:

1. be able to outline what they expect treatment to accomplish;

2. understand how diagnoses are considered and confirmed, especially of obscure problems;

3. understand the meaning of test results, including the chances of false alarms and false reassurance;

4. understand when screening tests for conditions such as breast or prostate cancer are most likely to be helpful or harmful;

5. 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;

6. have easy access to their own health reports.

The Nova Scotia department of health recently supported an advertising campaign with the theme “Time to Speak Up: Make Sure Your Voice is Heard”. We agree that citizens must be active participants in health care. Therefore we are organizing a series of health literacy workshops that we believe will enable people to participate in health system governance and in their own care. The first is scheduled for April 13 from 6:30-8:30 at the Halifax Central Library on Spring Garden Road.

David Zitner is a Senior Fellow for Healthcare with the Atlantic Institute for Market Studies.