How to champion people’s involvement in healthcare and help them make the best decisions?

People with cancer are seldom the center of disease management. What can your patient support program do about it?

By Selene Camargo Correa, PhD
Senior Consultant at A Piece of Pie

In 1951 an African American woman named Henrietta Lacks walks into a doctor’s office to find out that she has something in her womb that needs to be treated. She is at the John Hopkins Hospital in Baltimore, the only one that treats African American patients in town. A little later, she was diagnosed with cancer.

Born in a family of poor tobacco farmers, a housewife and mother of five kids, Henrietta had little education on health matters. Ignorant about anything related to tumors, when she started to feel like a “knot” in her belly and bleeding, she did not take these as signs that something wrong was happening to her. Once diagnosed, she was also completely in the dark as to the standard treatment for gynecological cancers and her prospects of recovery.

“Henrietta’s doctors increased her dose of radiation in the hope that the tumor would shrink and ease her pain, Henrietta’s belly burned blacker and the pain grew worse.” — Rebecca Skloot, “The Immortal Life of Henrietta Lacks”, 2010

During her doctor visits, spread over few weeks and in places where she was not allowed to mix with white patients, she probably felt isolated and thought that doctors spoke a different language. Like many doctors at that time, they tended to spare patients details about treatment options and withheld upsetting health information. The doctors focused instead on procedures. For the most part, all she knew about her tumor was that it was malignant, and doctors would try to fix it with medicine.

But details about her condition were not the only piece of information that was withheld from her. As part of the diagnosis process and a painful treatment with radium, doctors took tissue samples from her tumor without her consent or knowledge, a common practice dating back to the ‘50s.

As the medical community was about to find out, her tumor cells were of a rare and very resilient kind. They easily grew in labs, something quite unusual in tissue cultures. As soon as they realized its properties, scientists started growing and shipping them for research purposes to labs across the States.

They eventually became known as HeLa cells, and they proved helpful in testing the polio vaccine and chemotherapy drugs for leukemia and were used in research on gene mapping.

Henrietta died few weeks after the start of her treatment oblivious to what caused her cancer, which treatment options there were and what discoveries her cells would help to bring about years later.

Medical practices changed dramatically in the second half of the 20th century, due in part to lawsuits initiated by patients and scientists. Informed consent was implemented as an ethical and legal standard, patients’ rights were gradually secured and, fortunately for patients and scientists, medical research continued delivering results.

Although one may think otherwise, today’s individuals with cancer find themselves in a situation that differs little from Henrietta’s regarding the knowledge about the disease and treatment options.

Lack of awareness about what counts as a symptom — not all that obvious to a lay person — and about the various treatment options on the doctor’s desk dominates the first-person accounts of health care experiences that we, at A Piece of Pie, still hear today and partly explain why people often visit doctors when it is already too late. In particular, people with cancer are not aware about the rising importance of molecular and genetic testing procedures that will benefit them in the future.

In an allegedly overinformed world, individuals who enter meaningful conversations with doctors and who take informed decisions about alternative treatments or steps to improve their quality of life should be the norm and not the exception.

There is room for improvement in informed decision-making by people with cancer, which opens a whole world of opportunities for healthcare champions. In our experience, for cancer support programs to be effective one should:

1. Listen to your patients first. The most effective programs rely on first-hand and vivid accounts about their experiences. They know in great detail what they know and unknown.

2. Focus on where it hurts. Successful patient support programs zero in on the key pain points that, if properly addressed, enact behavioral changes in individuals that can lead to better outcomes.

3. Meaningful conversations. Successful programs boost patients’ outcomes and reduce healthcare inefficiencies by providing individuals with the tools to engage in meaningful conversations with doctors and other key stakeholders (i.e. nurses, hospital pharmacists).

4. Keep it simple. The best programs embrace succinct messages that are easy to remember, persuade and put in practice by patients, especially those that seek medical help in different phases of the patient journey.

5. Welcome digital ecosystems. Yes, there must be an app or a website for that, too. The most successful initiatives integrate easy-to-understand information about the disease and available treatments, tracking of symptoms, and overall fitness under treatment, plus the possibility to connect with other online services.

Fifty years after Henrietta’s death, Rebecca Skloot’s investigation helped the Lacks family to finally understand what had really happened to her and navigate research findings full of incomprehensible names. Until then, white doctors and the healthcare system had ignored them and kept them in the dark.

Let us not have other Henriettas left behind in this century.

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