Ordinary citizens and governments are 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 local health facilities.
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 encourages citizens to participate in their own healthcare and the development of health policy.
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 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.
In May, the Atlantic Institute of Market Studies (AIMS) convened a forum to discuss citizen participation in healthcare. 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 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.
Participants 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 so as to make thoughtful personal and political choices.
The forum also 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 healthcare, the measurement of results and the crucial issue of evaluating the likely benefits and harms of proposed treatments, including mental health and the evaluation of public health initiatives.
Patients are the most interested member of healthcare teams. 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.
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 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 seven important ideas that people must understand to participate in their own healthcare and understand health system performance.
Marco Navarro-Genie is President and CEO of the Haultain Research Institute.