Patients need not be patient anymore. As medicine’s doctor-knows-best culture of paternalism gives way, patients are participating in ways both personal and public — whether it’s an individual taking part in treatment decisions or groups of patients working to improve care for all.
Samantha Kennedy, for example, helped lead a medical conference session to make doctors aware of the subtle difficulties that teenagers with chronic conditions may face in taking their medications. When she was 14, Kennedy developed ulcerative colitis, which inflames the colon. A flare-up requires taking several different but similar-looking pills at various hours of the day.
The Berkeley Heights, N.J., native never told her doctor that she was concerned about organizing her pills. But she feared being embarrassed if her friends saw her giant pill container, which looked as if it belonged to her grandma. She’d hide it in a drawer at home or in her dorm when she went off to college — making her likely to forget to take the drugs.
“It’s a minor thing, but it’s a major thing when you think about the implications” for her health, she said.
Three years ago, at age 19, Kennedy began participating in a patient advisory council organized by ImproveCareNow, a national network founded in 2007 to devise the best care for kids with digestive diseases. The network has a registry of 24,000 patients at 84 care centers.
With funds from multiple federal agencies and the endorsement of the American Board of Pediatrics, the network has become a prototype for sharing information and ideas and setting care standards. Patient data regarding treatment, medication and outcomes are entered into the registry and can be analyzed in an effort to improve care. Some patients, like Kennedy, participate in community conferences to discuss their experiences. Parents share insights and strategies about coping with the disease.
“The expertise that patients bring to the table is understanding what happens between doctor’s appointments,” said Kennedy, now 22 and a first-year medical student at the Cooper Medical School of Rowan University in Camden, N.J.
As for the granny-type pillboxes, Kennedy is working with colleagues in ImproveCareNow to design more functional and attractive alternatives to standard models.
In the first two years of the project, remission rates rose: to 68 percent from 55 percent for Crohn’s disease patients and to 72 percent from 61 percent for ulcerative colitis patients. Since then, the remission rate for children in the network has reached 79 percent.
“Medical care is better when we share all the information we have and we help each other,” said Peter Margolis, a professor of pediatrics at Cincinnati Children’s Hospital Medical Center. Similar networks are planned for kidney transplants, cystic fibrosis and diabetes.
Engagement has been encouraged by the Internet, giving patients access to information and the opportunity to develop online communities.
“The democratization of the information and technology is allowing patients to want to take a bigger role in their health,” said Danny Sands, an internist who teaches at Harvard Medical School and co-founded the Society for Participatory Medicine, which promotes collaboration between doctors and patients.
Patients make their voices heard in different ways. Some want their lifestyles given more consideration in treatment decisions. When choosing a drug to treat diabetes, for example, they may want their priorities taken into account. Does the drug cause weight gain? Does it require injection? How frequently must one monitor one’s blood sugars?
Victor Montori, a professor of medicine at the Mayo Clinic in Rochester, Minn., and colleagues have developed flash cards and computer apps to identify what’s most important to a given patient. Similar tools can help doctor and patient decide how to address diabetes, heart disease, smoking cessation, osteoporosis and depression.
The result is “what’s best for you and your family,” Montori said.
Whether such an approach will become common practice is not clear. The Mayo Clinic tool on cholesterol-lowering drugs averages about 10,000 hits each month, up from 200 to 300 last year, Montori said. But the process requires time and effort.
“Engaging patients may be making taking care of patients more difficult, but maybe making it more difficult is exactly what’s necessary” to produce better results, he said.
Patient-centered thinking affects research as well, encouraging studies that examine which treatments are most likely to produce “outcomes that matter to patients,” said Joe Selby, executive director of the nonprofit Patient-Centered Outcomes Research Institute.
PCORI, created and funded through the Affordable Care Act, has financed research into follow-up treatment for children hospitalized with bone infections. In standard practice, intravenous antibiotics are given at home for a few weeks, burdening families with maintaining the intravenous line, keeping it clean and having a nurse check it. Many doctors have believed that oral antibiotics work just as well, at less cost and much less hassle for families, but there was no evidence.
Comparing outcomes showed that the simpler follow-up worked just as well and avoided complications. An analysis of more than 2,000 children’s treatments found that oral antibiotics were as effective as intravenous antibiotics, with 15 percent of patients on IVs suffering complications, according to the study, published in JAMA Pediatrics.
Patients’ insights on living and coping with disease may become of greater interest for medical journals, with the BMJ (formerly the British Medical Journal) leading the way.
The BMJ regularly publishes patient viewpoints and blogs and this year launched a series called “What your patient is thinking.”
In “Why there’s no point telling me to lose weight,” Emma Lewis recounted how her providers in Britain don’t always understand her frustration with weight. She wrote that she has “opted out of the weight loss game. If that makes me a non-compliant patient, then so be it. I’m healthier and happier than I was when I hated myself. I just wish that my healthcare providers would work with me on that.”
The journal’s editors invite a range of input, on the theory that health care will not improve unless patients take a leading role in fixing it. In a 2013 editorial, “Let the Patient Revolution Begin,” the BMJ committed to work with patients in an effort to make the journal a leader in patient partnership.
Patients are invited to review content for patient concerns. Medical authors are asked to state how patients were involved in conceptualizing and designing their studies. Patients are sought as contributors to educational articles and commentaries.
“We thought we’d be much more credible advocates for change if we did this within our own internal processes,” said Tessa Richards, a senior BMJ editor responsible for patient partnership strategy.
Each year, the Mayo Clinic’s chief residents invite an expert on improving patient care to be a guest speaker. This year’s expert was no exception: a contributor to medical journals and a participant in more than 400 health-care events globally.
The only difference was that he was not a clinician or researcher. Rather, he was Dave deBronkart or e-Patient Dave, a leading patient advocate. The “e” originally stood for electronic, but it also means engaged, empowered, equipped, enabled and educated about evidence, as he explains in his book “Let Patients Help.”
DeBronkart was diagnosed with advanced renal cell cancer in 2007, and Sands, who was treating him, gave him an unusual prescription: a referral to the Association of Cancer Online Resources.
Within hours of posting his first message on ACOR’s Web site, deBronkart got information from fellow patients that he hadn’t found in medical literature: new treatments under development and practical thoughts on living with the disease and coping with sometimes fatal side effects.
In a 2013 essay in the BMJ, deBronkart quoted his doctor saying how much the online advice had helped: “I don’t know if you could have tolerated enough medicine if you hadn’t been so well prepared.”
“The moment you have to deal with a serious illness, you find the right community and the benefits are going to be pretty apparent,” said Gilles Frydman, who founded ACOR in 1995 after his wife was diagnosed with breast cancer.
Frydman and others are taking these communities to the next level. Not only do they offer advice and experience to fellow patients, they’re also becoming sources of information for organized medicine.
Frydman co-founded Smart Patients, a platform that lets patients share stories, learn about up-to-date science, and search and discuss clinical trials. Smart Patients is a for-profit business that’s free to patients and caregivers and advises entities including Kaiser Permanente about engaging with patients.
Recently, PatientsLikeMe, a networking forum, was chosen to partner with the Food and Drug Administration as a possible source of information from patients about drug safety.
As patients take on new roles in medicine, they also may encounter formidable challenges — a large power imbalance still exists between patient and providers, and medicine is not always an exact science, Richards said.
“There are many uncertainties in medicine, and that’s something that’s sometimes difficult to handle.”
Samantha Kennedy begins her medical training believing that most patients embrace the opportunities for involvement. “We are active, engaged and empowered members of the health-care landscape,” she said. “There’s a lot of expertise waiting to be welcomed in.”
Levingston is a freelance writer in Bethesda.