How I Got Involved: to ease patient frustration

By Founder and Director Doug Balson

The idea to start a co-op formed when I worked for the B.C. Ministry of Health. Then, it solidified when I helped a family member set up the Canadian Pituitary Patient Network and Alberta Pituitary Patient Society. Patients in these groups told stories that made it clear Canadians need help to take control of their health records now.

As the Greek philosopher Plato once wrote, “necessity is the mother of invention”.

Diagnosis: frustration

I used to work as the Manager of Patient-Centred Performance Measurement for the B.C. government. My work centered on using patient feedback to inform service improvement projects. I conducted focus groups, in-depth interviews, and surveys with patients to help communicate their stories to the rest of the health care system.

A common feeling expressed in these stories is frustration. Frustration with physicians and care providers not believing them. With the frustrating challenge of tracking down medical records from their youth, a different province, a retired physician, a specialist, or a walk-in-clinic. And frustration with having to coordinate faxes between physicians or insurance providers.

A long-time kidney patient told the frustrating story of not being believed and ending up at the wrong hospital each time he had an emergency event. Each time, he would tell the emergency services he needed to go to Jubilee where the kidney specialists are. And each time, the ambulance would take him to Victoria General Hospital because protocol called for it. He would go through an hour of intake at VGH only to be told he should be at Jubilee.

Situations like this made me sure there is a better way. Best-practice protocols for some can be deadly for others. An emergency medical summary card, for example, could help communicate which best-practice protocols won’t work for the patient.

I began to imagine a co-op that would provide people with access to their health records. At the same time, it would support their ability to understand and communicate that information to health care professionals. Hopefully, in the process, the co-op would be able to alleviate some of the frustration.

A research-backed hunch

Research from all over the world shows patients need full access to all their health and medical records. When a patient can share their health records with their care team it can lead to earlier diagnosis. Earlier diagnosis can reduce the amount of time they must wait to get treatment and relief from symptoms.

There are also system-wide or Canada-wide benefits. Giving patients this access can improve the continuity of care they receive, reduce medical errors, eliminate duplicate testing, support appropriate treatment plans, and even save lives in emergencies. It can also save us billions in taxpayer spending on health care services.

My Health Information Co-op is an extension of what many patients are already doing – helping each other. People set up patient support groups out of necessity to help them navigate a health care system structured around the needs of health care professionals and bureaucrats. Because we’re a member-owned co-op, we put patients’ needs first.

Stronger together

Together, we can play a role in protecting Canada’s public health care system. We can steer it towards a national electronic personal health record system that actually works for patients. The first step is to join the co-op – we have power in numbers.

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