A car accident changed PJ Mierau’s life. When their car was forcefully rear-ended, his wife suffered significant traumatic brain injury. A fit active physiotherapist, she was left with crippling difficulties with energy, memory, and concentration. She could not work. The couple were catapulted into the labyrinth of poor healthcare: denied insurance claims, conflicting opinions, avoidant doctors, and sloppy records.
PJ was shocked to learn how little the patient voice was heard in healthcare. Investigating, he learned that many patient advocacy groups have financial ties to government or to big business. At major health conferences, he saw those claiming to be patient advocates who were not themselves patients. Ironically, he had to lobby conferences on “patient and family-centred care” to allow patients to attend. Repeated experiences with old-school vested-interest attitudes in healthcare reform led him to realize that Canada needed an organization that “would give patients a megaphone of their own.”
He and 3 others started Patient Critical, a non-profit co-operative that is “one hundred percent owned and operated by members led by patients.” For a one-time fee of $20, those who sign up get a lifetime membership. The organization is committed to take no money from government or from business interests. “We want this to be a grassroots campaign,” says PJ. “Like Mothers Against Drunk Driving. We want to create a culture supporting patient education, information, and attention to the patient experience.” Their chief goals are to increase literacy about healthcare, to provide an authoritative patient voice to sit at the table with their equal partners, to get answers and help accomplish real, patient-centered change in healthcare.
Their website (www.patientcritical.com) contains resources and toolkits to guide patients through healthcare concerns, such as evaluating the accuracy of online information. They bring the patient voice forward figuratively and literally: they have a patient experience podcast (on which yours truly has spoken). They are committed to polling the membership to identify key agenda issues, to bring those to the national level. For example, it is well known that most patients would like access to their electronic health records (EHRs) through an online patient portal. Patient Critical has dug into the issue, finding successful models of systems that provide incentives to business to build flexible and interoperable EHRs. It has also identified the barriers that drag portal implementation off-course, and has solutions to propose.
Patient Critical has the dream of helping doctors, politicians, and business. “We want to create structures that help them think beyond the next election, beyond the next quarterly report, to longer-term solutions that will improve health and save money.” To do that, they see the patient voice as integral to partnership and sensible long-term decision making. Their motto? “Patients are critical to keeping healthcare healthy.”
Patient Critical is for all patients, not just those with cancer. But given the depth and breadth of the cancer experience, it behooves patients and caregivers to consider supporting initiatives which put us at the forefront of healthcare reform. Patient Critical is found on Twitter (@patientcritical), Facebook, and their website. To join, click here.
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her cancer.