At La Clinica, a federally qualified health center in Medford, Oregon, that saw 30,000 patients last year, social networks have become a way to fight back against chronic disease, chronic pain, and opioid addiction.
“From our board of directors down through leadership, we are interested in upstream effects that lead to chronic health conditions and how we can help people be healthier and happier,” says Daniel Sengenberger, DO, Medical Officer for Operations and Outcomes at La Clinica. Two-thirds of La Clinica’s patient revenue is from Medicaid. La Clinica’s social networks — staff- and clinician-led support groups and classes — focus on pain management, mindfulness, healthy behaviors, and other wellness strategies. The goal, he says, is “to change the conversation from one where the patient expects the doctor to write a prescription, to getting to the root of what’s causing pain in the first place.”
Sengenberger is among the 78% of respondents to a recent NEJM Catalyst Insights Council survey on Social Networks to Improve Patient Health who believe that social networks are most useful to promote healthy behaviors, which ranks second behind chronic disease management (85%). The organization’s wellness center opened 2 years ago to offer cooking, meditation, exercise, and other healthy behavior classes.
Like 69% of Insights Council members, he also believes face-to-face group sessions or trainings are the most useful mode of communication for social networks.
Leading social networks is a foreign skill, even for Sengenberger himself. “In my residency 12 years ago, I was never trained how to lead a group or even the usefulness of groups,” he says. At first, the idea of leading a group was “intimidating” but then, with “time and structure and guidance” he learned to facilitate a positive conversation among a group of patients.
The time commitment from the health care team is significant (two-thirds of survey respondents rate it their top challenge in scaling social networks) but with Oregon so deep in the opioid crisis and needing clinicians to lead the charge for change, Sengenberger calls the effort worth the potential results. [La Clinica does not have statistics on opioid avoidance results.]
At PatientsLikeMe, a Cambridge, Massachusetts-based patient network pioneer, Co-founder and Chairman Jamie Heywood says he’s not sure who bears the onus of promoting online networks, considering that physicians are trained in evidence models. “You would be putting responsibility on a group that is counter-trained to do that well,” he says. Also, traditional clinical settings don’t do enough to empower self-learning. “It’s clear to me patient networks do not belong in an institutional framework,” he says.
PatientsLikeMe operates on a simple philosophy: “We believe in a world where the experience of each person guides the choices of the next,” Heywood says. In fact, Jamie and his brother Ben launched the initial version of PatientsLikeMe in 2006 when they were trying to gather as much information as they could about their brother Stephen’s ALS diagnosis. In 2011, they opened the website to all patients and all conditions, expanding to 2,700 conditions today.
While only 38% of survey respondents consider websites a useful mode of communication, PatientsLikeMe has more than 500,000 users of its learning health system. Patient networks like PatientsLikeMe, Heywood says, are important for healing and quality outcomes — perhaps exceeding the capabilities of medicine. And he’s starting to see the tide turn in terms of clinician acceptance of their value. “I think many physicians, especially younger ones, are aware that getting [social connectedness] right is critical for giving effective care,” he says. However, he still sees pushback against patient networks from health systems that are more hierarchical and rigid.
Patient networks [can] bridge the information gap, particularly in chronic disease, Heywood says, and expose the impact on how one lives or works or raises their family. For instance, some groups discuss the psychology, the stigma, the pain, and the reactions of self-injections. “That kind of dialogue is enormously beneficial,” he says. In PatientsLikeMe’s epilepsy group, an 18-year-old sought advice for how to talk to his partner about the potential of him having a seizure during sex — not something he felt comfortable asking his doctor. Patients also can discuss alternative and emerging treatments — topics that can make physicians wary.
Jeffrey Johnson, MD, Chairman of Obstetrics and Gynecology at Wentworth-Douglass Hospital, a community hospital with around 178 licensed beds in Dover, New Hampshire, says social networks should start to be part of standard care and be reimbursed as such. His hospital has emotional support groups for patients who have experienced prior fetal loss, but he’d like to see more done around the impact of substance use and opioid addiction on pregnancy. “Our hospital is in the number one county in New Hampshire for opioid deaths,” he says. Currently, funding for social networks/support groups comes from the hospital’s charitable foundation.
He’d also like the county to maintain a clearinghouse of social networks and services available in the community. “We have to call around and see what’s out there, and programs expire so quickly,” he says. A nurse could be tied up for 2 to 3 hours trying to get a patient into a rehabilitation program and there is no reimbursement for that effort. “Right now, we’re doing it because it’s the right thing to do,” he says.