My Health Information Co-op’s social networking site is an alternative to using Facebook. The site serves the Co-op’s mission of improving health literacy which Health Canada defines as the degree to which individuals can obtain, process, understand necessary health information and services needed to make appropriate health decisions.
It’s simple – patients shouldn’t use Facebook
But why shouldn’t patients use social-networking spaces like Facebook1 in which they have already converged and apart of an already-active patient support group? Facebook defines their group feature as “a space to communicate about shared interests with certain people.” The Facebook group feature already allows patients and health professionals to interact through posts. Why duplicate the Facebook service?
First, I use Facebook and this article is more about using Facebook strategically than it is about going cold trukey. Most of us are not going to give up Facebook but we can be more strategic about what information we give Facebook to sell. We also need to understand that Facebook is an environment that does not provide any immediate monetary benefits to its users, and I feel that it is unfair; especially unfair to patients. Patients should have the possibility to (cooperatively) receive financial benefits from their participation in any online community as well as an ability to build, control, modify, and maintain the infrastructure that allows their communities to come into being in the first place. When patient support group activities take place on Facebook, it helps build equity for Facebook with no financial benefit to patients.
Additionally, conversations on Facebook are owned by Facebook. Patient information posted on Facebook is not portable, and the only way to remove personal formation from Facebook is to delete it – and even then, the data persists on Facebook’s servers for some time.
In contrast, when someone joins the My Health Information Co-op, they help build equity for the Co-op; this equity flows back to patients by eliminating annual membership fees and creating the capital needed to develop and enhance Co-op services. In My Health Information Co-op’s communities, conversations are owned by the patient and patients can delete or download their content – they own it.
Private Facebook groups are not private
Facebook offers the use of private groups, but what does that mean? What’s the difference between a public and private Facebook group? Private groups only let current members view group content and see who else is in the group, and a private hidden group requires an invitation to join. Like public groups, everyone can search for and view the name, description, and member list of a closed group. But Facebook users can’t see the group’s content until they become a member. Joining a Facebook closed group requires approval by an administrator or invitation by a current member and no one can search for private hidden groups or request to join them.
This cloak of privacy all sounds good. However, using a Private group does not mean the information is not accessible to marketers and researchers. For instance, anyone on Facebook can see who the admins and moderators of a private group; and, of course, Facebook has access to all content on its platforms.
Unbeknownst to many, private groups on Facebook can become public. People participating in private groups should also be aware that group settings can change. In 2017 Hulu created a secret group for fans of “The Handmaid’s Tale.” In anticipation of the launch of the second season, the group’s administrators decided to make the group public to reach a wider audience. The decision upset many members who did not intend for their previous posts to be publicly available.
Do you have a feeling you’re being tracked?
Facebook has used data collected from private groups for its own purposes. For example, through Onavo, a VPN service they acquired in 2013, they tracked the use of mobile apps on smartphones. Facebook’s activity occurred without users’ knowledge and used by Facebook to determine which companies to acquire, and which to treat as a threat.
While Ad sales are the primary source of Facebook’s revenue, there is increasing revenues from major app developers based on the financial value of the developers’ relationship with Facebook2. Facebook has admitted to sharing user data with an estimated 5,000 third-party developers. In Facebook’s for-profit world, marketers are always on the prowl for ways they can target members of private groups. Unfortunately, the for-profit world leaves Facebook open to potential vulnerabilities.
The Co-op offers a better way for patients social networks
Importantly, when someone joins the My Health Information Co-op, they help build equity for the Co-op; this equity flows back to patients by eliminating annual membership fees and creating the capital needed to develop and enhance Co-op services.
Proprietary vs. Open-Source
My Health Information Co-op makes democratic decisions and uses an open-source platform, BuddyPress and WordPress for its community learning site. Because the code underlying these tools is freely available, our members can take part in the constructive and collaborative process of building new features for the very platform upon which their community is built. This potential is impossible when using Facebook. In a proprietary setting, like Facebook, modifications to the core platform are acted upon only at the discretion and according to the timetable of the for-profit platform owner.
Data Ownership and Data Portability
In contrast to Facebook, Co-op members assume more meaningful control over their information. Unless approved by Co-op members, the site will be devoid of advertising, thus reducing the extent to which patients are commodified within (and by) the online community. Our goal is not to liberate data from one source only to lock it up in another source – our members own and control their information.
The Co-op’s social network platform – the way forward
Information shared in social network sites has proven useful in health prevention campaigns, educational programs, and chronic disease management – these community learning sites have become practical tools for patients and health care practitioners to share or seek information2.
Factors as to why social learning sites are effective include: extrinsic motivation, social and psychological forces, as well as the social networking and sharing culture of the communities. In a study3, 4 of a Facebook patient support group, researchers concluded that groups supporting self-management have comparable outcomes to in-person programs. While no robust research evidence presently exists to showcase the advantages and disadvantages of using peer support groups on Facebook, what research is available suggests that such groups offer an effective platform of support for the management of chronic diseases. Community learning sites, like patient support groups, reduce the participant burden of engaging in in-person group support programs.
1 On July 8, 2019, Apple co-founder Steve Wozniak warned users to get off of Facebook. Watch “Should I get off Facebook” for an explanation of how Facebook monetizes all user information (even if you participate in a private Facebook group).
2 On December 5, 2018, documents obtained in the probe of Six4Three were released by Parliament. Damian Collins.
3 Della Rosa S, Sen F, Health Topics on Facebook Groups: Content Analysis of Posts in Multiple Sclerosis Communities, Interact J Med Res 2019;8(1):e10146, URL: https://www.i-jmr.org/2019/1/e10146, DOI: 10.2196/10146, PMID: 30741640, PMCID: 6388097
4 Partridge SR, Gallagher P, Freeman B, Gallagher R Facebook Groups for the Management of Chronic Diseases J Med Internet Res 2018;20(1):e21 URL: https://www.jmir.org/2018/1/e21, DOI: 10.2196/jmir.7558, PMID: 29343460, PMCID: 5792702