The Rise of the Patient Participant

Either the doctor’s best friend or nightmare, the e-patient movement (the ‘e’ could stand for engaged or empowered) is here to stay and growing, writes Marylyn Donahue.

Championing patients as full partners in their own medical care, via the use of online communities and social media sites are slowly but surely turning patients into participants rather than mere recipients.

The theory, said Sean Ahrens, founder of Crohnology.com, is that patients who share information about their healthcare experiences and engage more fully in understanding their options will receive a higher quality of care.

But then imagine consulting with your somewhat staid elderly a doctor, who thoughout his long career is is used to having his word be the last word (if not the word on high). He announces a plan that is a fait accompli but you counter that you would prefer to take a whole different route. And you’re just speaking for yourself. Your opinion is buttressed by thousands of patients at Roni Zeiger’s site Smart Patients who have exchanged information and the results seem promising.

Like Crohnology.com, Smart Patients takes a similar approach to cancer. Patients can learn from each other about new treatments and clinical trials. There are individual communities for specific types of cancer on the site, but patients can also interact across disease communities on relevant topics.

“Science is changing so fast,” Sean Ahrens says. “Sometimes a network of informed patients is aware of new treatment before an individual physician.”

Ahrens, who was diagnosed with Crohn’s disease when he was young became proactive in his treatment. He tried different diet lifestyle changes and prescription drugs to keep his symptoms under control, but what he craved was to be able to share science, and for other patients to share their experiences with him.

So he built the beautifully designed Crohnology.com, a social network of more than 5,000 fellow patients with Crohn’s and colitis. Peer-driven, the site is where patients like Ahrens can swap details on tricks and treatments for managing their disease, as well as easily track the progress of their own symptoms.

Crohn’s disease may not be well understood but its effects are devastating for the suffers-a chronic inflammatory disease of the digestive tract its symptoms are often debilitating and unpredictable. And while there is no cure and the cause is unknown, treatment and lifestyle changes can mitigate many symptoms.

Through Crohnology.com patients with Crohn’s or colitis, can track their own symptoms and treatments, prompted via text message to give regular updates on the status of their health. That data are then translated into user-friendly charts and graphs, making easily discernible what has worked to manage symptoms across the site’s vast patient population and what hasn’t.

“We’ve been able to show that diets play a big role in the disease,” Ahrens says, “and those are low-cost and low-risk treatments.”

“By making patients participants rather than mere recipients, implies that patients engage more fully in understanding their options and will receive a higher quality of care,” says Dr. Larry Chu, director of Stanford Medicine X, an initiative that examines medicine and emerging technologies “A lot of patients have become experts in their disease,” adds Chu. “They have a lot to teach us about how to take better care of them. Patients are the most underutilized resource in health care.”

Susannah Fox, associate director at the Pew Internet and American Life Project, wrote on her blog that “the most exciting innovation of the connected health era is … people talking with each other.”

But at present, the number of patients who communicate with each other online about their health is still relatively small.

According to recent Pew research, about 24 percent of American adults with a significant health concern reported getting information or support from others with the same health condition. But about 8 percent of Internet users said they had posted a health-related question online in the past 12 months or shared their own health experience online.

Pew research found that those with chronic conditions, or their caregivers, were more likely to seek peer counsel, moving away from a “paternalistic” model of medicine.

Ahrens and Zeiger hope their sites can make valuable contributions to medicine. Crohnology.com has partnered with researchers to mine the site’s vast data trove for information that might be useful in finding a Crohn’s cure. Smart Patients is working with scientists to use patient feedback to design better clinical research.

In the future, Ahrens hopes to enable patients to also run their own research trials in collaboration with other patients. ”We’re basically realizing that we’re really a platform for a new way of doing research,” he said.

Crohnology.com is in part a vision for a better way to practice the medicine of the future, but it’s also a tool meant to better the lives of individual patients now.

For Ahrens, “it’s like having an army of support at any time, at my beck and call.”

With many thanks to Kristen V. Brown at the San Francisco Chronicle.