Patient Experience

Becoming an Engaged Patient—Lessons From a Student With HIV

The latest issue of the Beryl Institute’s Patient Experience Journal includes a patient narrative about coping with an unexpected diagnosis of HIV and challenges associated with accessing care. Beyond the author’s particular circumstances, which include being a university student from overseas, his story shows how a patient can grow through the experience of seeking medical care and navigating a complex system to become an informed and engaged patient helping others.

Having been tested routinely as part of reapplying for a study permit while in Canada, Vincent Croft (a pseudonym) was shocked to find he was HIV positive, a condition about which he admits to knowing very little at the time. Fearful, ashamed and depressed, he separates from his partner and withdraws from involvement with friends and schoolwork.

Croft’s situation begins to improve when Canadian care providers in Montreal bring him up to speed about HIV, AIDS and antiretroviral therapy (ART), which will allow him to resume a somewhat normal routine. He gains knowledge and confidence as he begins therapy but quickly encounters an obstacle, the cost of treatment. When Croft applies to become a permanent resident of Canada, which would allow him to receive ART free of charge, he finds that his diagnosis disqualifies him specifically because of the cost of care. His story, which reads like a classic coming-of-age saga, takes a good turn when Croft discovers a clinical trial he can join, with the benefit of free ART.

Photo by Alexandr Podvalny. https://bit.ly/3ggWCPr

A couple of years later, Croft accepts an invitation to join a Patient Advisory Committee dedicated to working with clinical researchers on projects to develop patient-centered interventions. He describes feeling insecure about what he might be able to contribute. He again gradually develops knowledge and confidence, finding that he can apply skills from his academic life to helping other patients.

Croft’s story is a valuable reminder that even the most accomplished and active engaged patients likely started out feeling scared and overwhelmed. He reports that his progress has been slow, deliberate and somewhat tenuous, with gradual gains in understanding and occasional setbacks:

I learned that winning battles did not mean achieving full victory. Indeed, my access to ART remains unsure and temporary. I feel that this uncertainty is ‘eroding’ my motivation to take ART, and I fear eventually being out of solutions.

Knowledge and expertise come from experience and hard work and may not guarantee permanent success. Croft’s honest reflections offer a real-world model for gaining control of one’s medical situation, which I find especially inspiring.

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 134 post(s) at EngagingPatients.org

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