How do patients attain equal status if they’re seen as ‘non-expert’?


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4 comments

  1. Mike Fraumeni

    Wonderfully stated Francine and I couldn’t agree more and living through something similar to this at the moment in the health care system among some health care professionals. Thank you for writing this piece.

  2. Margaret Fleming

    Like this a lot! Separate but equal is just another imaginary construct.

  3. Nancy Gale

    Francine Buchanan, you are an amazing women. Having worked in acute and community care, I know the health system has much to learn from experts like you. Kathryn Hales and I co-led a patient and family advisory group in community care. Called Share Care Council, we were humbled by the knowledge of our members – we learned so much from them. A new approach moving patients from hospital to home, reduced hospital re-admissions by 52%, reduced hospital stays by one day and improved patient satisfaction significantly. The health experts implemented the system, but it was Share Care Council members – patients and caregivers – who shared their expertise that directly – directly – made such improvements possible.

    “Expert” is defined as a person who has a comprehensive and authoritative knowledge of or skill in a particular area. That’s you. You have unique expertise in the continuity of care for children with complex health issues. To ignore that because there isn’t MD after your name, is to ignore what is best for the patient. “To do no harm” must mean using best available evidence – and you have that to share, every single day. If I had a child with complex care needs, I would want your expertise to help me do the very best for my child and to ensure the medial profession did, as well.
    I look forward it reading your thesis on physician/patient communication when it is published.
    Nancy Gale

  4. Zal Press

    There’s a compelling scene in the first episode of the recent CBC mini-series “Unspeakable”, which magnificently dramatizes the tainted blood atrocity of the 1980’s that saw thousands perish as a result of contaminated blood products. A mother is pleading with her hemophiliac son’s physician to change blood treatment product after presenting evidence she had gathered pointing to a growing number of HIV transmission through blood products. After rebuffing her repeated requests and demeaning her evidence, he rises from behind his desk, and angrily dismisses her saying “Look, I’m the medical professional here.” He continues to his office door opening it, holding it open for the woman, a teaching professional, and says with mocking arrogance, “So you can get back to teaching the ABC’s now.”

    That scene illustrates the core power imbalance in healthcare that is at the heart of the debate over who is the expert. As a patient I’ve participated in debates on this “patient expert/expert patient” topic across the globe, from NZ to UK and USA. For many it fits neatly into classic anti-oppression terms.

    I’ve heard it argued that patients are an oppressed class. That gains made in Patient participation have come at the courtesy of those holding power. As a result, the vocabulary used is one established by those in power. So when patients speak of being experts the term seems to be misplaced. As it rightly is. When patients co-opt oppressor terms with their own metaphors, the oppressor views these as a challenge to authority. “PhD in lived experience” is best understood through this lens. It could also be argued that the Nuka system term for patients – Customer Owners – is more reflective of the health system user in Alaska than the conventional oppressor term “Patient”.

    This battle over who the expert is or is not, is one of semantics. It’s one of power, control, and authority. It’s quite clear now that partnering with the public is essential to the success of any research or quality improvement and that this movement of shared purpose is perceived as a threat by those in control. The transfer of power to a more equitable model isn’t going to come without great resistance.

    Our biggest challenge is in learning how to communicate. This move to patients as partners often comes without a definition of “partner”. Does it mean equal or majority or minority partner? Professionals graduate from training with a 35,000 word vocabulary. Patients are forced to learn a language without the leisure of years to study, and yet many have been able to do it.

    Meanwhile HCPs, policy makers, administrators, and researchers resist learning the language of human experience. When they do learn it, they understand better why homelessness and loneliness clog up emergency rooms and why empty slogans like “hallway medicine “ring hollow; why grandmothers may deliberately ignore their medication; why opioid addicts are not lying about their pain when they come for prescription refills; why people with diabetes ration insulin and hide their needles from their families.

    True equality doesn’t come from imposing a tyranny of professional credentials. In an equal partnership each side represents a specialized knowledge base fundamental to the needs of the partnership. HCPs bring their training. Patients bring their human experience, each one unique and complex. Who’s the expert? That’s oppressor language. Partnership language is different, recognizing the centrality of reciprocity in the relationship.

    It’s not too late. We can learn from the mother in Unspeakable that shared experience is superior to expertise, that collaboration is more important than subordination. And the sooner we learn it the better, in order to harness the human experience to reduce pain and suffering and avoid more catastrophes like tainted blood.

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