Therein the patient
Must minister to himself.
I served as the program director for the Sixth International Conference on AIDS, held in San Francisco in June 1990. When I accepted the job, I knew that organizing the world’s preeminent AIDS gathering would be daunting. There were 4,000 scientific papers to judge, 12,000 participants from around the world to accommodate, and 1,500 members of the media to feed and placate. As a naive 31-year-old physician just finishing my clinical and research training, I understood virtually nothing about patient engagement, and even less about activism.
I learned quickly. By the time the conference ended, I had fielded several calls from AIDS activists accusing me of killing their loved ones because we had turned down a favorite paper. I had invited activists to serve on all the conference’s key committees. After the conference became a target of an international boycott triggered by the U.S. government’s decision to prevent HIV-positive people from entering the country, I helped organize a colorful protest march down San Francisco’s Market Street.
In my 1991 book, The Fragile Coalition: Scientists, Activists, and AIDS, I wrote,
The empowerment of patients and the questioning of scientific expertise will be part of the sociological landscape, and not only in AIDS. Having our patients and our research subjects ask, or demand, to have an active voice in what we do and how we do it may be challenging, time consuming, and even unpleasant. It is also undeniably right.
The AIDS activists were angry, and justifiably so. AIDS first struck, and ravaged, the gay community—a disenfranchised group that had long been discriminated against in myriad ways, and one that knew both self-advocacy and street theater. (My favorite example of the latter came in 1991, when the group ACT UP lowered a huge condom over the Arlington, Virginia, house of anti-gay Senator Jesse Helms.) They knew that federal action and funding would be key to solving the puzzle of AIDS, yet they saw little evidence of either. (President Reagan did not utter the word AIDS in a speech until 1987, after the deaths of 41,000 people, mostly gay men, in the United States.) By the end of the 1990 AIDS conference, I had great respect not only for the activists’ political savvy, but also for their deep knowledge of the disease and its treatments. Long before the days of Google, they had researched HIV and AIDS with the rigor of scientists. And their level of expertise often surpassed that of their physicians.
Twenty-five years later, the face of patient engagement looks more like Neil Feldman, a 61-year-old retired technology executive who lives on a lovely tree-lined street in Rockville, Maryland, with his wife, Judy. When I entered the Feldman home, two Australian cattle dogs, Scout and Ralph, sniffed me warily. A steady stream of birds visited the backyard bird feeder during our lunchtime interview. Books and family pictures were everywhere.
Neil Feldman is very thin (borderline cachectic, in fact), and he’s wearing clothes that are now a couple of sizes too big. He smiles easily and often, which I take as testament to an indomitable personality, with an assist from the long-acting morphine he takes for painful bone metastases. When Feldman learned he had kidney cancer in May 2010, he signed on to a website that is now called Smart Patients, an online community for cancer patients run by Roni Zeiger.27 Feldman’s cancer was surgically removed, and, although the tumor was very large, the margins were cancer-free. Unfortunately, two years after the surgery, in July 2012, the cancer recurred in his leg bone and his spine, making it Stage IV and probably incurable.
Before the diagnosis of cancer, “I had no interest in anything medical, which in hindsight was probably a mistake because, once I got into this, I found it fascinating,” Feldman said. “I joined Smart Patients because I was looking for other people’s experience… . Gaining knowledge creates a level of control where, at least, I know what is going on. It helps me deal with what’s thrown at me.”
Feldman posts to the website often, but he keeps his posts understated. “I don’t want people to know how bad my cancer is,” he said. “If something happens, you know, it’s devastating to folks. Everybody wants to be upbeat, I want to be upbeat … when you get close to death.”
He paused, and his wife, Judy, chimed in, recalling the mother of a child with cancer who frequents the site. “The mother says to Neil, ‘Please keep your health up; you’re my son’s hero; he wants to know that you’re thriving.’” Neil told me about another patient on the site, Trevor from Scotland. He and Trevor used to spar, “but I immensely profited by our exchanges, because he made me think and I made him think. But he didn’t make it.”
I wondered if Feldman’s doctor found his level of engagement, and his knowledge about his cancer, threatening. “I was very lucky because I was referred to a doctor [Dr. Hans Hammers at Johns Hopkins] who was very open-minded and encouraged this from day one,” he said. “But at this point [his cancer has spread after several types of treatments], I’m done putting my two cents in. I’m at a precarious place, and he’s the expert… . But I still test him against what I know and learn. It’s not carte blanche by any means.”
Judy described the value of having a group of people who understand what you’re going through. A serious illness changes not just your perspective, but your priorities—about what matters to you, and who. You treat your casual circle of friends differently, Judy said, and they do the same to you. People stop inviting you over. “They’re afraid to or they don’t know what to say,” she added. “So you lose your usual community. But now you’ve got another community that understands.”
But why not join a local, real-life support group, I asked. “Neither of us are emotional types; we’re both kind of intellectual,” Judy said. “We’re not into touchy-feely groups. One of my nieces said to her mother, my sister, ‘Oh, you’ve got to go up there and hold Judy’s hand,’ and I thought, ‘Oh, my God, don’t you dare!’”
It’s worth highlighting a couple of points here. One is that the virtual community has some distinct advantages over an in-person community. In addition to allowing for far-flung relationships (Neil and Trevor were extraordinarily close, although one lived in Maryland and the other in Scotland), people post things they would never say to someone else.
This turns out to be true in the doctor-patient relationship as well. As we think about the role of computers in collecting historical information from patients, while there are downsides (not being able to judge tone of voice and body language, for example, although computers are starting to overcome this limitation), there are upsides as well. Boston University researchers developed a computerized avatar named Louise to educate hospitalized patients about their upcoming discharge. The patients interact with Louise via a computerized touchscreen interface. Not only is Louise far more cost-effective than a real live nurse or doctor, but, by a ratio of three to one, patients prefer her to an actual human. “It was just like a nurse, actually better,” said one patient, “because sometimes a nurse just gives you the paper and says, ‘Here you go.’ She explains everything.”
Moreover, Neil Feldman said he found that—rather than distancing him from his doctors—being a knowledgeable patient empowers him, and that his clinicians like it. Of course, everyone knows there are Dr. House types who would find such patient empowerment off-putting, even unacceptable. Larry Fagan, the retired Stanford informatics professor who is battling prostate cancer, is a Smart Patients user but doesn’t mention this to his doctor. “When I saw my oncologist yesterday, there were a couple of times I wanted to say, ‘We’ve been talking about this on the list,’ but I knew she would flip,” said Fagan. “So I just suppress that.”
Still, increasing numbers of physicians appreciate the advantages of the knowledgeable patient. Dave deBronkart, who has made a second career out of his persona as “ePatient Dave” (and who, like Neil Feldman, has metastatic kidney cancer) told me about his relationship with his primary doctor. “Think about it,” he said. “A hundred years ago, to get their numbers checked, a person with diabetes had to go to the doctor.” Now there are test strips, glucometers, and continuous glucose monitoring systems. Those tools haven’t put endocrinologists out of business. On the contrary, they have enriched the face-to-face time a patient has with his physician. “If we go into the visit with both parties knowing what’s going on, then we can spend the visit talking about what we do about it.”
The fact that Smart Patients works for Neil Feldman and Larry Fagan owes a great deal to its thoughtful design, much of it by Roni Zeiger, the site’s cofounder and CEO. Zeiger is an example of the new breed of physician who straddles the worlds of healthcare and technology. We met in the Silicon Valley warehouse office that his start-up shares with a photography studio. He commutes to work by bicycle, his laptop in his backpack. The company’s strategy is mapped out on Post-it notes stuck on the outside of the bathroom door. Japanese lanterns hang from the ceiling, the studio’s glossy photographs line the walls, and Zeiger and his coworkers stand at their computers to do their work. The MacBook Pro belonging to one of Zeiger’s colleagues sits atop oversized art books, while Zeiger has opted for two reams of printer paper and the boxed set of Seasons 3 and 4 of The Wire. During my visit, Billy Joel, James Taylor, and Simon and Garfunkel played softly in the background. We sat around a low table, the garage door that serves as the front entrance open to the street.
As Zeiger sees it, the Internet has gone through two distinct phases. The first, in which his old employer, Google, was the victor, involved democratizing access to content. The second, characterized not only by Facebook and Twitter, but also by Uber, Airbnb, and Yelp, has been about democratizing access to other people.
When Zeiger was at Google, one of his roles was to help the company understand this transition as it pertained to healthcare. He discovered a small, e-mail-based cancer community run by a guy named Gilles Frydman whose wife had a serious cancer. Frydman noticed that many of the participants in this community were migrating to Facebook, despite the fact that Facebook doesn’t work very well for health communities. He and Zeiger brainstormed about what an ideal online cancer community might look like, but Zeiger was busy at Google, and things didn’t progress beyond that.
That is, until August 1, 2011, at 5:15 p.m., when, while running on the treadmill, Zeiger suffered a subarachnoid hemorrhage and found himself in Stanford Hospital’s neurosurgical intensive care unit. “That was a day of great intensity and clarity,” he said. “When I figured out that I had a brain bleed and that I was going to be okay, I thought, wow, I got a free pass.28 What am I going to do with this? I decided it was time to leave a great job, to take a big risk, and to see if that Frydman guy still wanted to do something together.”
One of the most critical choices Zeiger and Frydman needed to make for Smart Patients concerned how to deal with recommendations for unproven, or even wacky, treatments. Zeiger’s instinct was to block such posts: he wanted the site to tilt in the direction of science. But Frydman and other advisors convinced him that the better, more sustainable solution was to allow the community to monitor itself.
It works. When people start advocating for quack therapies, their peers jump in and start correcting them, often throwing up links to legitimate science. Zeiger proudly attributes this aspect of the site to the creation of two big cultural expectations. “First: when data exist, data win. Two: be respectful.” Zeiger and his team monitor the posts and aren’t afraid to take one down or privately e-mail someone with a suggestion when these rules are violated, particularly during the early days of a new community, when the culture is most fragile. But after the first few posts, such takedowns are rare, because “discussions about unproven therapies are generally handled not only effectively but really elegantly by the community. People call ‘bullshit’ respectfully, much better than a site administrator could.”
In fact, it is not absurd treatment recommendations that cause Zeiger and his colleagues to lose sleep. Rather, the hottest button is religion, often versions of, “You’ll get better because I’m praying for you.” Posts like these pose an impossible problem for Zeiger, pitting his desire to let people be open and honest against the desire to create a space within which people are not being preached at. The company handles these on a case-by-case basis.
Smart Patients and other online communities are demonstrating that patients can learn a tremendous amount from one another. Like many personal health records (the untethered ones), these websites currently exist outside the orbit of the electronic health record. But Zeiger has already struck deals with several healthcare organizations to offer Smart Patients to their patients, as they might a new treatment. One can envision a day when patient-centered communities and clinician-centered ones blend together, with patients gaining information and support from peers while periodically being counseled by credentialed experts. Here, as with the other patient-facing innovations like OpenNotes and patient portals, it is this integration between the worlds of the patient and the clinician that carries the most promise.
In 2008, the core health IT policy question was whether the government should be involved in trying to get hospitals and doctors to computerize. That question was answered affirmatively, to the tune of $30 billion. Today, the dominant question concerns the government’s role in connecting electronic health records to one another and to the kinds of electronic tools and apps that patients are increasingly drawn to. Let’s explore this next.
27 Zeiger was a trainee of mine at UCSF in the 1990s, and I have made a modest personal investment in Smart Patients.
28 The mortality rate of all patients with subarachnoid hemorrhage is 40 to 50 percent, and many who live are left with significant disability.