I blog, I tweet and I use Facebook. And as I recently told a medical colleague, social media has been an enormously useful tool in my work.
“I can barely keep up with e-mail,” he snorted back. “I’m not about to open up that black box.”
About 15 years ago, during my residency and just as the first blogs were starting up, I took care of a patient in his mid-40s whom I’ll call Eddie. In a waiting room filled with elderly patients crippled by vascular disease, Eddie looked out of place. Until you looked closer at his fingers and toes. Parts of them had been amputated.
Eddie suffered from Buerger’s disease, or thromboangiitis obliterans, an illness that causes clotting and inflammation of the blood vessels of the hands and feet. Considered an “orphan” disease because of its relative rarity, Buerger’s disease compromises the blood supply to a patient’s fingers and toes. Eventually these patients, who are usually men in their 20s to 40s who smoke, develop excruciating pain, severe ulcerations and gangrene. And more often than not, they must undergo progressively higher amputations.
There is no cure for Buerger’s disease; the only way to slow the process is to quit smoking. Therein lies the tragedy. For unknown reasons, patients who suffer from Buerger’s disease are profoundly addicted to tobacco, far more so than most smokers. It is nearly impossible for them to quit.
Eddie wanted desperately to quit. Over the two years that I cared for him, he tried at least a dozen times. But his already challenging task was made even more difficult by his isolation. Eddie lived alone, estranged from his family, with friends and co-workers who grew increasingly unsympathetic to his plight. “They don’t understand why I keep smoking if I keep losing fingers,” he said to me one afternoon. “They just don’t understand how hard it is for me.” Moreover, because his disease was so rare, he had no community of fellow patients to turn to in his town or at our hospital.
But his visits to the clinic always seemed to cheer him up. He responded, it seemed, to my encouragement, and each time he left, he renewed his vow to quit smoking. But weeks would pass and his enthusiasm would wane. If I contacted him by phone, his momentum might continue another few days, but finding a mutually convenient, quiet moment to talk on a regular basis was exceedingly difficult. I tried scheduling frequent follow-up appointments, but Eddie lived over an hour away from our hospital and could not afford to keep missing work.
Eventually, Eddie lost another two fingers, the front half of his left foot and his entire right foot. The youngest man in my waiting room soon became confined to a wheelchair. At the end of our last visit, I stood in the clinic hall watching him inch away from me in that chair, pushing off the ground with the remaining stump of his left foot and grasping at the wheels with hands that had become mitts.
I thought about Eddie and other patients I have cared for who might have benefited from more frequent contact when I spoke with my colleague about social media and the patient-doctor relationship. I wondered if Eddie would have felt a little less isolated and perhaps been able to quit smoking if I had, for example, texted a word of encouragement to him every few days, interacted through blog comments, or directed him to an online community of people who were dealing with the exact same disease.
A survey released today by the Pew Internet and American Life Project reports that 61 percent of Americans go online for health information, and the majority of them have turned to user-generated health information. But a quick scan through peer-reviewed journals reveals only a handful of articles, and no evidence-based guidelines, to guide doctors on the use of social media. It is unclear whether such engagement adds to or detracts from a therapeutic patient-doctor relationship, and clinicians are unsure about what constitutes good standards of care and professional responsibility on these platforms. For example, should doctors give out diagnoses or prescribe treatment on Facebook or a blog? If doctors and patients communicate on Twitter, is a doctor liable if she or he misses a patient’s tweets about the acute onset of shortness of breath?
Dr. Sean Khozin, who blogs and can be found on Twitter @SeanKhozin, is an internist and founding member of Hello Health, a paperless “concierge” practice based in Brooklyn that utilizes e-mail, instant messaging and video chat for coordinating care. “There are so many layers of bureaucracy between health care providers and patients,” Dr. Khozin said. “We can use social media to coordinate care with patients and with different specialists, all using the same platform. I can monitor my patients, and they can also use these tools to become empowered through a better understanding of their own disease state and active engagement.”
In Dr. Khozin’s practice, that engagement occurs on a secure site, as patient privacy remains a major concern with all forms of social media. But on platforms such as Twitter and Facebook, where privacy is more difficult to insure, those concerns also extend to physicians. “On the one hand it is really good to see the human side of your doctor on a site like Facebook,” observed Dr. Daniel Sands (@DrDannySands), a physician at Beth Israel Deaconess Medical Center in Boston, Mass., and a consultant with the Cisco Internet Business Solutions Group, as well as co-author of the first set of guidelines ever published on using e-mail in patient care. “On the other hand,” Dr. Sands continued, “maybe letting your patient get too close isn’t always good for the therapeutic relationship.”
Taking on the responsibilities of yet another form of communication can also be onerous for physicians, many of whom already feel overburdened by multiple demands on their time. “Physicians are really busy,” Dr. Sands said. “In our current health care environment, the only commodity they have is time. Doctors don’t want to introduce new technologies of unknown value, which is why many were hesitant about e-mail. Something like Twitter is going to take longer to accept because the value proposition is even hazier.”
Still, there continues to be anecdotal evidence regarding social media’s potential to strengthen the patient-doctor bond. “One way I see that power is through education,” said Dr. Christian Sinclair, a physician for Kansas City Hospice who has created a palliative care network through his blog and Twitter (@ctsinclair). “I can help to inform the public, I can put the knowledge I have out there. And if there are patients or families who need this knowledge, I can help them because of this network.” Dr. Sinclair has, for example, helped individuals he has met through Twitter connect with local hospices, a process he believes was expedited by Twitter’s particular platform.
And social media can also help patients and physicians widen illness support networks, which in turn can augment the patient-doctor relationship. Health care providers have long known that patients with chronic or life-threatening diseases benefit from support groups made up of people who can sympathize and empathize with them. But such support is difficult for physicians or hospitals and clinics to cobble together when patients and families are physically isolated or homebound, or when they have an orphan disease like Eddie’s.
“With social media,” Dr. Sands observed, “we can aggregate across space and across the world and create a safe environment for support. Although there may be only 10 people in greater New York with a certain disease, there may be 250 people across the world.” Dr. Sands recalled guiding a patient to the Association of Cancer Online Resources, a social network of online communities for patients and families. “That was the most important advice I ever gave him. It was an information prescription.”
Social media platforms can turn 10- or 20-minute doctor’s visits into an ongoing dialogue, where sources of information and, potentially, support are continually available to the patient and the doctor. “Platforms like Twitter can be powerful if doctors are a lot more active in disseminating their expertise,” Dr. Khozin said. “Patients are being bombarded with information online, but I don’t think all that information necessarily empowers them. You also need expertise.”
Social media has kept me connected with colleagues and a few former patients, allowed me to stay up-to-date with certain health care and medical education issues, and helped me to keep abreast of Web-based resources that might be useful to those I care for. It has also taught me a tremendous amount about the experiences of patients and caregivers, information I’m not sure I would have had access to had I not been engaged online. Although I am far from a savvy user, I have come to think of social media like I do any other test, instrument or procedure; it’s extremely helpful in some situations, and for some patients, and less so in others.
A few days ago, staring at a blank screen and thinking about this column, I tweeted: Working on column on social media (spec. Twitter, Facebook, blogs) and patient-doctor relationship. Any opinions?
Minutes later I began to receive replies, including this one from @achronicdose:
Knowledge from patient-peers thru social media *can* mean more helpful talks w/ dr; dr. p.o.v. helpful for patients to read.
Doctor or patient, you are never alone in the twitterverse or blogosphere; there is always someone who is willing to offer some help or lend some support. It’s a world that I think might have made all the difference for a patient like Eddie.
Copyright 2009 The New York Times Company