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Should Personal Experience Guide Health Care Policies?

In the absence of systematic evidence, anecdotes rule the day. Unusual cases of negligence, tragic rare events, and exceptional health system failures have been the fodder for media sensationalism triggering anxiety in the hearts of bureaucrats, health care managers and the general public.
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Lies, damned lies and...anecdotes. The latter have been the scourge of many conversations about health care in Canada over the last several decades.

Whether we consider patients and their families looking for good quality health care, or government officials deciding about health system priorities, the absence of readily available pertinent information about health care has been a barrier to decision making for everyone.

In the absence of systematic evidence, anecdotes rule the day. Unusual cases of negligence, tragic rare events, and exceptional health system failures have been the fodder for media sensationalism triggering anxiety in the hearts of bureaucrats, health care managers and the general public. Too often these samples of one have been used to typify the entire Canadian system.

Sure, juicy anecdotes make for great stories, but do they help improve the system? To be fair, the answer is sometimes. Root cause analysis of a rare medical error can certainly help to identify and correct problems in the inner workings of health care. But how many anecdotes of good or poor care do we need before we make up our mind about a local health care provider? Should personal experience guide policy makers' choices about health system priorities?

No part of the Canadian health system has been the subject of greater controversy than long-term care. Most Canadians would prefer to spend their final days at home, so the decision to enter long-term care often comes with considerable personal anguish for residents and their family members. But what do we really know about nursing homes in our community? If long-term care is needed, how do we decide which home we want? If the physical surroundings are in good repair and the air smells acceptably clean, do we have enough information to judge the quality of care in one home compared with another? Probably not.

Fortunately, new information sources have emerged to support a more informed dialogue.

On Wednesday, the Canadian Institute for Health Information (CIHI) unveiled its new website to help Canadians make these tough decisions based on sound data. CIHI is a trusted and authoritative source of information about health and health care. Your Health System provides an unprecedented level of information about all aspects of the health system, including nine scientifically based measures of the quality of nursing homes in Canada.

Concerns about a lack of progress related to electronic medical records in general have overshadowed dramatic achievements in the nursing home sector across Canada. We now have more comprehensive information about nursing home residents in our country than for patients in community hospitals.

How can Canadians use this information? In most provinces, you can enter the name of a specific home and learn about the demographic and clinical characteristics of its residents. Quality indicators related to safety issues, appropriateness and effectiveness of care, and health status can be used to compare the home you are interested in to other homes in a chain, the local region, the province and the country.

Experts chose these indicators because they are considered important measures of health system performance. CIHI provides interpretative guides to help you understand what is above, below or about the same as average performance on each indicator.

In choosing homes to apply for care, your personal impressions of each home can now be complemented by rigorous evidence about how well the home does on nine aspects of care. If your relative is in a home that is not performing well on a particular indicator, you can now ask the administrator what the home is doing to improve care in that area. If elected officials in your province promise to improve the quality of care for seniors, you now have a yardstick to measure how well they have kept their promises.

Anecdotes will always be part of the conversation, but now Canadians have a new source of scientifically sound evidence to inform our decisions. It is important to identify and act on the failings of our health system, but it is equally important to recognize moments of progress. The Canadian health care system just became more transparent on a national scale.

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