Key Performance Indicators, or KPIs, identify and track goals that are important to an organization. At the Patients’ Association of Canada we are determined to develop such KPIs from a patient and family perspective. These indicators will help us measure the extent to which an organization achieves its goal of being patient and family-centred. We base our indicators on actual patient and family experiences and we develop and articulate them together with groups of patients and family members. Our goal is to distil a series of easily measured and relatively “hard†performance indicators that demonstrate critical aspects of patient and family centred care.
The following story provides the basis for a KPI that assesses the extent to which patients and family members have access to their medical records, and are able to correct factual errors in them.A young Newfoundlander arrived in Toronto last year to look for work. He found a well-paying construction job and after several weeks, he went out to celebrate with some friends. He got marvelously drunk, took a bad fall, and broke his leg in several places. His leg was operated on and it was found to be a particularly complex case that required special rehabilitation that could only be provided in Texas. The Ontario Health Insurance Program paid for this, as it does in unusual cases that require services not available in Canada.
When he arrived in Texas he was told that as a condition of entering the rehab program, he would have to go to a daily meeting with an Alcoholics Anonymous group. Asking why this was required, he was told that his medical record stated that he was an alcoholic and that the service was not prepared to rehabilitate him only to have him injure himself again due to his alcoholism. He protested that he was not an alcoholic, but only an occasional drinker.
It turns out that he had not even been asked about his drinking habits by the doctor in Toronto, although it was clear that he was drunk at the time of his fall.
When he returned from rehab he called us and told us of the difficulties he was having trying to access his record, and the apparent impossibility of changing the diagnosis of alcoholism.
We believe, along with other groups like Patient Destiny, led by Professor Kevin Leonard, that patients like him should have easy access to their medical records as a fundamental aspect of patient and family centred care. This story and others like it have convinced us that patients and their families should not only have access to their own records, but must also be able to correct factual errors in them. This could become a very straightforward KPI of patient and family-centred care.