The Tension Between Privacy and Social Interaction for Online Peer Support Groups – #HITsm Chat Topic

We’re excited to share the topic and questions for this week’s #HITsm chat happening Friday, 4/5 at Noon ET (9 AM PT). This week’s chat will be hosted by David Harlow (@healthblawg) on the topic of “The Tension Between Privacy and Social Interaction for Online Peer Support Groups”.

There is a dynamic tension in our use of social media for online healthcare-related conversations: On the one hand, we need to be social, whether for individual conversations or for the even more powerful conversations that take place in online peer support groups that exist on Facebook and other platforms. On the other hand, we need to be assured of appropriate levels of privacy and security for these sensitive conversations, conversations that are sometimes accompanied by personal health record data shared in order to get help making sense of a new diagnosis or a new test result, or images that might be considered unacceptable in general-purpose online communities, or many other categories of information that are not the usual stock-in-trade of publicly-posted materials.

In recent months, we have learned many things about Facebook’s apparent approach to privacy and security. Starting about a year ago with the Cambridge Analytica story, it seems that sometimes there is a new story daily about yet another way in which the company has allowed user data to be accessed in a way not anticipated or agreed to by users. These include a vulnerability which, until brought to Facebook’s attention, allowed anyone to download real names, email addresses and other personal information of members of closed (i.e. “private”) Facebook groups. (The most glaring example of this vulnerability has been addressed, but it is not 100% fixed, and we have filed a complaint letter with the Federal Trade Commission highlighting this issue.) This is of grave concern to patients who participate in peer support groups and share many personal details about their health and healthcare, including genomic data or test results ranging from BRCA tests to HIV tests and beyond. This is also of grave concern to, say, members of Facebook groups for gay men in Chechnya or sub-Saharan Africa, or members of support groups for family members of patients with certain diseases or conditions – all of whom may have been identified (and still may be identified by determined hackers) and may be targeted by government actors, scam artists and others.

A number of us recently had the opportunity to discuss these issues at the Health Datapalooza in late March 2019. (See my forthcoming post on the relevant conference session and unconference session at the Datapalooza, up soon at HealthBlawg.)  The “Project Lighthouse” Collective is focused on forward-looking planning — envisioning what the ideal patient peer support network might look like, from a number of different perspectives, looking at good governance, good partnerships, good moderation, and good technical platform characteristics. The core principle driving this framework for patient peer support groups is that there must be a trusted patient-driven and patient-governed collective at the center, and that the entire enterprise must function for the benefit of patients. That’s easy to say, but hard to do, so we have been thinking through all of these parameters in depth, which led me to list a few topics for discussion this week.

Topics for this week’s #HITsm Chat:
T1: What is “trust” in an online setting and how can you develop trust among people who have no relationship in real life? #HITsm

T2: What do you need besides trust in order to build strong online communities? Can you give any examples of strong online communities and some of their key characteristics? #HITsm

T3: How are the best partnerships between researchers and patients structured? If the researchers are researching using data analysis only, and not treating patients, does that change your answer? #HITsm

T4: If you were on the “central committee” and you were organizing or reorganizing a society – or a group of patient peer support groups – from scratch, how would you organize the group, or the group of groups? What would be your top three ground rules? #HITsm

T5: Can you describe a situation where individual autonomy is respected by a group in a way that does not detract from the strength of the group? Online or offline, real or virtual. #HITsm

Bonus: If you had one piece of advice for someone wanting to share genomic data online in a patient peer support group, what would it be? #HITsm

Upcoming #HITsm Chat Schedule
4/12 – No One Gets Out Alive – Empowering Advance Care Planning with Health IT
Hosted by Dr. Carol Robinson (@MakingChoicesMI) and Brian Mack (@GLHC_HIE)

4/19 – No chat due to HITMC Conference

4/26 – Destigmatizing Mental Health Through Storytelling
Hosted by Janae Sharp (@coherencemed)

5/3 – TBD
Hosted by TBD

5/10 – TBD
Hosted by TBD

5/17 – Awareness and Social Media Fundamentals for Patient Communities
Hosted by Amanda (@LALupusLady)

5/24 – TBD
Hosted by TBD

We look forward to learning from the #HITsm community! As always, let us know if you’d like to host a future #HITsm chat or if you know someone you think we should invite to host.

If you’re searching for the latest #HITsm chat, you can always find the latest #HITsm chat and schedule of chats here.

About the author

John Lynn

John Lynn

John Lynn is the Founder of the HealthcareScene.com, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference, EXPO.health, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.

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