Great article Emily! It is so incredible to see more people speaking about the importance of community in health technology. I wanted to say something in defence of user-led online communities, especially in terms of misinformation and moderation.
My research area is in diabetes, and so I am unsure if this translates to other areas/conditions. But the research in the diabetes space suggests that misinformation is uncommon, outside moderation is not needed, and that these online communities do more good than harm.
A recent review of diabetes online communities (DOC) has shown that they do more help than harm, and that misinformation was uncommon: "Potentially misleading and misinformation in DOC posts ranged from 0-9% and were characterized as unlikely to lead to untoward effects". These groups were moderated by people within the DOC.
My colleague Ashley Ng has also spoken on DOC and misinformation: "Ng said she often hears providers who worry about misinformation that could potentially be spread in such online communities, putting people with diabetes at risk. Such risks, Ng said, are overblown, as the communities tend to be self-regulating."
Diabetes online communities don't need to be moderated by someone outside the community to prevent misinformation. They are moderated by people with diabetes.
Although I understand these communities can sound scary, I would love to see more support of them! For example, health professionals encouraging their patients to seek out peer support. And I think we can also learn something about accessible these are, especially from the benefits we have seen from telehealth during the pandemic.
My own research has shown that participants found online peer support more accessible and, in some cases, more knowledgeable than traditional support when it came to their novel technology use. People described receiving support within minutes online, compared to the weeks it would take to book an appointment and see their health professional. Participants also described peers as more knowledgeable about this new technology than health professionals or industry customer service agents (e.g. when calling a hotline).
Bibliography:
Review of DOC: Litchman, M. L., Walker, H. R., Ng, A. H., Wawrzynski, S. E., Oser, S. M., Greenwood, D. A., ... & Oser, T. K. (2019). State of the science: a scoping review and gap analysis of diabetes online communities. Journal of diabetes science and technology, 13(3), 466-492, p. 485
My work: Schipp, J., Skinner, T., Holloway, E., Scibilia, R., Langstrup, H., Speight, J., & Hendrieckx, C. (2021). How adults with type 1 diabetes are navigating the challenges of open-source artificial pancreas systems: a qualitative study. Diabetes Technology & Therapeutics.
Great article Emily! It is so incredible to see more people speaking about the importance of community in health technology. I wanted to say something in defence of user-led online communities, especially in terms of misinformation and moderation.
My research area is in diabetes, and so I am unsure if this translates to other areas/conditions. But the research in the diabetes space suggests that misinformation is uncommon, outside moderation is not needed, and that these online communities do more good than harm.
A recent review of diabetes online communities (DOC) has shown that they do more help than harm, and that misinformation was uncommon: "Potentially misleading and misinformation in DOC posts ranged from 0-9% and were characterized as unlikely to lead to untoward effects". These groups were moderated by people within the DOC.
My colleague Ashley Ng has also spoken on DOC and misinformation: "Ng said she often hears providers who worry about misinformation that could potentially be spread in such online communities, putting people with diabetes at risk. Such risks, Ng said, are overblown, as the communities tend to be self-regulating."
Diabetes online communities don't need to be moderated by someone outside the community to prevent misinformation. They are moderated by people with diabetes.
Although I understand these communities can sound scary, I would love to see more support of them! For example, health professionals encouraging their patients to seek out peer support. And I think we can also learn something about accessible these are, especially from the benefits we have seen from telehealth during the pandemic.
My own research has shown that participants found online peer support more accessible and, in some cases, more knowledgeable than traditional support when it came to their novel technology use. People described receiving support within minutes online, compared to the weeks it would take to book an appointment and see their health professional. Participants also described peers as more knowledgeable about this new technology than health professionals or industry customer service agents (e.g. when calling a hotline).
Bibliography:
Review of DOC: Litchman, M. L., Walker, H. R., Ng, A. H., Wawrzynski, S. E., Oser, S. M., Greenwood, D. A., ... & Oser, T. K. (2019). State of the science: a scoping review and gap analysis of diabetes online communities. Journal of diabetes science and technology, 13(3), 466-492, p. 485
Ashley's interview: https://www.healio.com/news/endocrinology/20190811/do-not-fear-online-peersupport-networks-in-diabetes-care
My work: Schipp, J., Skinner, T., Holloway, E., Scibilia, R., Langstrup, H., Speight, J., & Hendrieckx, C. (2021). How adults with type 1 diabetes are navigating the challenges of open-source artificial pancreas systems: a qualitative study. Diabetes Technology & Therapeutics.