Before being recommended by physicians peer to peer support need to be trustworthy. Lay person patient advocates involved with peer support need to practice to ethical standards that specifically focus on emotional support while deferring treatment and medical advice to professionals. I think it is worth noting that a lot of the Diabetes Online Community is already there.
It is not me making up the value of peer to peer connections. Studies demonstrate that technology based communications can improve all types of diabetes compliance. These studies have examined people with diabetes from a variety of age ranges, economic backgrounds and nations. Patients who have received internet support have better health outcomes, typically measure by HbA1c. Studies also show improved patient quality of life measures.
Research matters so brief overview of key points form a few studies follows. Bandura (2004) observes, “The field of health is changing from a disease model to a health model.” It is no longer enough to treat the sick, health he writes, “is heavily influenced by lifestyle habits” and “health promotion should begin with goals not means.” To me that can be seen to say the goal is living better with diabetes and maybe the doctor’s office is only part of the way to get to better.
In Pumpers, Skypers, Surfers, & Texters: Technology to Improve the Managemnt of Diabetes in Teenagers Harris, Hood and Mulvaney observe that, “the goal of this technology is to support health behaviors and implement changes in strategy in a way that is more integrated into the everyday lives of patients and even in the context in which behaviors occur in “real time.””
The goals of change can start in consultation with healthcare providers but must happen in individual’s lives. These changes can be difficult. The internet can be a means of peer support for change if it connects with real empathy and support for making change.
Even with significant advancements in the tools used to provide self care in recent decades, “the daily management of diabetes can be overwhelming,” say Bond, Burr, Wold and Feldt (2010.) A twelve-month study showed that diabetes support delivered through an internet-based program significantly improved behaviors in lower literacy populations improved as much as other participants. This reenforces the importance of followup as part of the cycle of care (Kol et al. 2012.)
In Patient Week 2011: How Health 2.0 can improve patient compliance, Lui observes that patient opinion leaders in various levels of social media can inspire better compliance. Lui advocates for interaction of pharmaceutical firms, professionals and social media to improve patient compliance citing a Roche event that brought representatives of social media, the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE) together in a social media summit. (Having been at that very event I would add that developing cooperative action between those participants is critical and often missing at social media summits.) Hawn (2009) suggest that, “new media tools like weblogs, instant messaging, video, chat and social networks are reengineering,” health. In part Hawn suggest this is happening as a transition from one-to-one communications to a many-to-many dialog that values inter-patient dialog. This improves “the experience of those either receiving or delivering it.” Hawn identifies value not only to those in need of support but to those patients who provide it.
I think this is significant. Providing others with support has health value. In a peer to peer environment it is accountability to peers that drives healthy behaviors. The peer pressure that parents worry will lead teens astray can be a tool to keep those same parents, if they are living with diabetes, on track. They just need the right peers. The goal is to find peers who help sustain change to healthy behaviors. Some would see sustaining change to healthy behaviors as compliance. That word however often is felt to carry a significant amount of paternalistic judgment that is often counter productive to the very ends it seeks.
A legitimate concern of health professionals is that social media may cause patients to seek alternative treatment options online. Studies suggest this is not the case. Fox (2011) says, “The bottom line is that the internet does not replace health professionals.” Like Fox, other research shows patients turn to the internet for emotional support. Toljamo and Hentinen (2001) found that patients struggling with diabetes had “no difficulties with insulin treatment, but had more problems with other aspects of self care.” They go on to say that changing long held lifestyle behaviors is complex and that emotional support for lifestyle issues “might be a motivating factor in improving adherence to health recommendations.” Glasgow et al. (1999) had similar findings saying, “Support from one’s healthcare team was most strongly related to following recommended diabetes care guidelines, whereas use of community resources especially ‘personal support’ and family resources were more related to lifestyle behaviors” Piette (2008) says, “One promising approach to enhancing diabetes self-management support is to increase mutual support among patients facing similar behavioral challenges.”
So to me it seems that there is ample cause to think that peer to peer support on the internet or in real life can have be a positive force to help people live better with diabetes. Better is an ongoing goal. As we move into the world of the Affordable Care Act I think that peer to peer connections can play an effective role in both better and affordable care.