Participatory medicine: A high-tech alliance with patients

Information technology is making patient participation in medicine more workable -- and possibly more financially advantageous to doctors and patients.

By — Posted Jan. 18, 2010

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As physicians experience mounting pressure to contain costs and improve outcomes while their patient loads increase, many are finding that patients can be the most cost-effective and valuable tools to help them do their jobs.

The concept of participatory medicine, where patients take a more active role in their care, can enhance the physician-patient relationship and allow physicians and patients to bring their own expertise and knowledge to the table to produce the best outcomes.

At its most basic level, participatory medicine means shared decision-making and deep patient engagement. Because of the rise in technology use -- as well as an increase in out-of-pocket health care expenses -- this has gone well beyond the traditional tell-me-where-it-hurts conversation between patient and doctor in the exam room.

The business benefits of a participatory approach, especially as it relates to technology, have not been well documented. But proponents say adopting a participatory model of care can increase patient satisfaction, save time, reduce costs and improve care. Experts say the model of care also could lower liability risks for physicians. And patients who have a better understanding of their illnesses are likely to be healthier.

Technology such as social networking sites, e-mail, personal health records, home monitoring devices and patient portals have made communication between patient and doctor not only more convenient but also more meaningful.

Patients are able to do more independent research, making them better informed. They can compare costs, exchange information with other patients, and bring that knowledge back to their physicians. Technology even can allow physicians to monitor a patient's health without a visit to the office, creating more time to see sicker patients.

Alan Greene, MD, clinical professor of pediatrics at Stanford University School of Medicine in California and the president of the Society for Participatory Medicine, said physicians have many misconceptions about what it means for patients to share in decisions about their care.

Physicians "are afraid this is something that will cost them time and money, and it will create arguments with patients," Dr. Greene said. "But when this is done correctly, it's something that actually makes a richer and deeper conversation and really leverages the expertise of the physician in a more powerful way than before and can actually save time and money."

History of participation

Many point to the 1999 Institute of Medicine report, "To Err is Human: Building a Safer Health System," as the foundation for the participatory medicine movement. The report concluded that hundreds of thousands of patients die each year from preventable errors, though the figures were disputed by many.

A year later, a second IOM report, "Crossing the Quality Chasm: A New Health System for the 21st Century," was published. It laid out six specific improvement aims. These included more effective use of technology such as computerized physician order entry systems and electronic decision support tools. Another strategy was to make health care more patient-centered.

At the time of the second report, the Internet had become a household staple for millions of Americans. Like-minded patients were creating online communities to support and educate one another. As online information improved, patients were becoming more educated and feeling more empowered.

In 2007, Dave deBronkart was diagnosed with stage IV kidney cancer. His physician prompted him to join online communities for cancer patients to gather knowledge he could share with his care team. "What I found and what I continue to hear today ... is that there's a lot of information developed in the last few years that is not yet in the hands of every oncologist in the world," said deBronkart, a software technology professional in Nashua, N.H.

Yet a common concern for physicians is that patients will bog down the office visit by arriving with a stack of information they printed from a Google search.

Gail Gazelle, MD, assistant clinical professor of medicine at Harvard Medical School in Boston and president of MD Can Help, a patient advocacy practice, says if patients arrive with too much data, the physician simply can set limits. "Blame it on the HMO, blame it on your insurance company, blame it on whomever," she said, "but just tell the patients, 'They just don't give me the time to look at this kind of stuff. Do you think you could distill it for me and we can talk about it?' "

Isabel Hoverman, MD, an internist in Austin, Texas, has found that Internet research has made patients better prepared for their office visits. "As computer access has gotten broader, patients are able to sift through material and many times will access good sources of information to be able to ask you better questions," she said. Many of Dr. Hoverman's patients have given her material that she has shared with other patients.

"There are things that have not changed and will probably never change: Patients really respect their doctors, and they really trust their judgment," said Ted Eytan, MD, MPH, a family physician and medical director for delivery systems operations improvement for the Permanente Federation in Washington, D.C., a national association of regional Permanente Medical Groups. "Participatory medicine is actually about engaging the patient in their health in new ways. It's not intended for the patients to take over the interactions."

New education efforts are helping to eliminate some of the confusion over what is and is not participatory medicine. A new journal for patients and physicians, the Journal of Participatory Medicine, was launched recently by the Society for Participatory Medicine, of which Dr. Greene and deBronkart, now a patient advocate, are founding members.

The Joint Commission has started a campaign called "Speak Up," aimed at empowering patients to be more involved in their care.

Making the case

Developing this model of care likely will involve process and work-flow changes, staff buy-in and possible technology investment. Many early adopters already had health information technology in place, and the participatory approach was carried out, in part, by using it.

Proponents of participatory medicine admit that the business case for taking this approach has not been well documented.

A recent study in the December 2009 issue of Arthritis Care & Research found that increased patient responsibility for medical decisions decreased their likelihood to accept risky treatment options.

What this means for quality and cost savings is open to interpretation, but Dr. Gazelle knows that patient engagement can lead to lower costs without sacrificing efficacy. And now that patients are paying more out of pocket, they are more open to discussing costs.

For example, a patient came to her insisting she be given an MRI because of information she found online. When Dr. Gazelle told the patient that an ultrasound would be one-third the cost and would produce the same results, the patient went with the ultrasound.

When physicians openly discuss treatment options with patients, the patients understand that you are "not withholding something because of cost, you are not denying it, you are explaining to them," Dr. Gazelle said. When given all the facts, patients and doctors usually reach a well-informed, mutual decision.

Taking this approach also could help reduce liability risk, said Dr. Mohammad Al-Ubaydli, CEO of Patients Know Best, a U.K.-based technology company that developed a fully integrated personal health record system that works with a practice's electronic medical record.

When patients and physicians look at information together -- and stop errors earlier -- patients are less likely to sue, said Dr. Al-Ubaydli. "Lawsuits tend to happen when something is done to the patient without the patient's knowledge, and they find out about it a long time afterwards and no one apologizes for it."

Once patients understand more about their conditions, they take more responsibility for managing their health, experts say. And the more a patient's care can be managed without coming into the office, the more time is saved for sicker patients.

This doesn't equate to a loss to the practice, said Daniel Sands, MD, MPH, an internist at Beth Israel Deaconess Medical Center in Boston who also serves as director of the Internet business solutions group for Cisco Systems. "You are now billing at a higher intensity level," he said. In addition, several insurers now pay for online consults, which means physicians could create a new revenue stream from an activity done during their downtime.

Dr. Al-Ubaydli suggested starting with 10 to 20 chronically ill patients with whom you have a good relationship. He also recommended that the patients be people who work full time, as they will better appreciate the time saved with online consults and e-mails. Once the practice has adapted to the work-flow changes, it can slowly add patients to the list of those with whom they communicate electronically.

The effort could have other benefits as well. "Patients who feel they can have open communication with their doctors, patients who feel their doctors treat them as adults in a mutually respectful way, those are the people who are going to like their doctors more," Dr. Sands said. "They will tell others, 'My doctor is the best, you've got to go to see my doctor.' This will set you apart from a competitive standpoint."

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Participatory technology

While the participatory medicine concept can be carried out in a paper world, technology helps facilitate communication between physicians and patients. Here's how technology can fit into a participatory medicine model.

E-mail: Patients can alert doctors ahead of an appointment about what they want to discuss, reducing the time it usually takes to find out what's wrong and allowing the doctor prep time to gather data to share.

Personal health records: Having access to a patient's personal health record will help you coordinate your efforts with those of other physicians or caregivers.

Patient portals: Besides offering secure communication and appointment scheduling, patient portals can allow patients to view their medical records and upload them to a personal health record to share with other caregivers.

Social networking sites: Many patient communities exist online where patients can connect and share information. Physicians could moderate the sites to ensure that patients are accessing reliable information.

Home monitoring devices: Physicians can monitor chronically ill patients while reducing the frequency of office visits.

Electronic medical records: A fully functional EMR can be the centerpiece of participatory medicine. It can be the repository for data collected by other connected technology.

Source: Daniel Sands, MD, MPH, internist at Beth Israel Deaconess Medical Center and director of the internet business solutions group for Cisco Systems; Mohammad Al-Ubaydli, MD, CEO of Patients Know Best; and other online sources

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Participation without the technology

Gail Gazelle, MD, an assistant clinical professor of medicine at Harvard Medical School in Boston who also runs a patient advocacy practice called MD Can Help, is a pioneer in the participatory medicine practice model. But, she says, her practice is pretty low-tech -- uncommon among the advocates of participatory medicine.

Technology, she said, is just one way in which patients can become engaged in their care. Physicians can engage patients simply by changing the way they talk to patients.

She said presenting information in a conversational way, as opposed to a way that portrays the physician as the boss, can make for more productive interactions.

Ted Eytan, MD, MPH, a family physician who serves as medical director for delivery systems operations improvement for the Permanente Federation, the national organization for regional Permanente Medical Groups, said he's a strong advocate of the "tell-back/teach-back" method. After you explain something to a patient, have them describe it so you can see how much they comprehend.

"It's actually really enjoyable to teach someone something they didn't know," he said. "It's not really that much fun just to fix people."

The more patients know about their conditions, the more engaged they will be in their care. This idea was bolstered by the recent launch of the "Speak Up" campaign by the Joint Commission. The campaign is meant to educate patients on how to become more involved in their care. Among its recommendations: "Don't assume anything."

The group is urging patients to educate themselves on their diagnosis, the medications they are taking, their treatment plans and any tests that are recommended.

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External links

Society of Participatory Medicine (link)

Journal of Participatory Medicine (link)

"Patient responsibility for medical decision making and risky treatment options," Arthritis Care & Research, Dec. 15, 2009 (link)

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