“Nothing About Me Without Me” — 20 Years Later

Casey Quinlan looks back on twenty years of progress in participatory healthcare.

“To deny people their human rights is to challenge their very humanity.” ~ Nelson Mandela

The Phrases of Participatory Healthcare
Patient-centered care — that’s medical care that’s focused on the patient, not on the convenience or sustainability of the healthcare delivery system. Person-centered medicine — that’s related to the previous phrase, in that the medicine and care plan delivered to the patient is crafted with that person’s preferences and values on how they want to live their lives, and manage their health. Shared decision making — the process where members of a clinical team work with the person/patient to determine a care plan, balancing the science with risks and benefits of various treatment options.

These are phrases that are seen everywhere, in medical literature and in medical marketing, in the 21st century. They’ve become so commonplace that most people think that’s been the core of medical thinking since … well, forever. However, these phrases, and the philosophy behind them, are less than a century old. Let’s hop in the Way-Back Machine for a history lesson, shall we?

Patients: Not Just Lumps on an Exam Table
Two doctors are considered the founders of patient-centeredness as a feature of medical practice:

  • Ian McWhinney, a Canadian MD who was one of the founders of modern family medicine as a practice model
  • George L. Engel, an American MD whose work developed what became known as the “biopsychosocial model” of medicine, where a patient was not just seen as a biological collection of symptoms, but as a whole person with psychosocial circumstances that impact their health.Since nothing happens quickly in science, the work of McWhinney and Engel appeared in journals, from the 1950s through the rest of the 20th century, but there were no big headlines in public view.

Nothing About Me Without Me
Fast forward to 1994, and the release of the book, Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care. One of the co-editors of that book was Dr. Tom Delbanco, a primary care MD at Beth Israel Deaconess in Boston, a professor of general internal medicine at Harvard, and one of the founders of the Society of General Internal Medicine. Four years later, at the Salzburg Global Summit in 1998, Dr. Delbanco was one of a panel of presenters at Session 356, Through the Patient’s Eyes: Collaboration between Patients and Health Care Professionals where one of the attendees, Valerie Billingham, said, “nothing about me without me” as her interpretation of what the session was, at root, advocating for. That statement has become a rallying cry in the activist patient community in the 20 years since, giving rise to the “ePatient movement,” a global effort to help people become equipped, enabled, and educated to participate actively in their healthcare, no matter their health, or socio-economic, status.

Slogans Drive a Movement Forward
So, has that “rallying cry” made any meaningful impact on the actual lived experience of humans seeking medical care, and participating fully in the decisions and actions involved in that care?

Since you’re reading this, you know that some people/patients are most certainly actively involved in creating patient-centered care, not just for themselves, but for everybody. The professional side of the equation has also stepped up to make “nothing about me without me” more than just a great catch-phrase.

Science moves slowly. German theoretical physics titan Max Planck said, in his 1906 book Lectures on the theory of heat radiation, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” That’s been paraphrased as “the field advances, one funeral at a time.” In just 20 years, we’ve seen a massive shift in thinking on the clinical side, as medical professionals have looked to partner with, rather than simply minister to, people in need of medical care.

Nothing About Me Without Me: Impact on Clinical Research
On the person/patient side, there’s been a rising tide of demand for partnership with the clinical teams who care for us, rather than the patriarchal model that defined medicine for millennia. I mentioned the ePatient movement a few paragraphs up – as mobile devices and the web make it more possible for people to interact both with their clinical teams, and with peer groups who share their health conditions and issues, people/patients no longer have to rely on a single source (their doctor) for all the information necessary to understand their medical condition(s), and the treatment of them. Anyone who can read can be an ePatient. One of the most powerful ePatients I know, Eric Valor, is bedridden by ALS, with a vent to help him breathe. He types via eye movements. From his bed, he manages ALS research projects via SciOpen, his research organization, is an active contributor on many social media platforms, and gives keynote speeches, like this one for the San Francisco March for Science in 2017.

Eric’s work is just one example of how “nothing about me without me” now intersects with and impacts clinical research, not just in-clinic care. This presents new opportunities for scientific discovery to unlock some of the most challenging human diseases, like Parkinson’s and diabetes… and ALS. Let’s get to work!

 


Casey Quinlan covered her share of medical stories as a TV news field producer, and used healthcare as part of her observational comedy set as a standup comic. So when she got a breast cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment, and wrote “Cancer for Christmas: Making the Most of a Daunting Gift” about managing medical care, and the importance of health literate self-advocacy. In addition to her ongoing work as a journalist, she’s a popular speaker and thought leader on healthcare system transformation from the ground up.

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