What’s your relationship with privacy? Um, it’s complicated.
By Jodi Sperber (@jsperber)
Jodi Sperber
Photo by Gilles Frydman
Last year, I sat in the audience at a MedX panel, listening intently to a conversation about communicating the experience of illness in the digital age. This session, captured succinctly on Storify, touched upon a broad range of topics, from disclosure to ethics to the need for “radical hospitality” (in quotes just because I love that as a phrase) to build community. Several individuals raised the notion of privacy and its significance, and at the very end of the session I stood at the mic to underscore the notion that privacy was less about keeping something secret and more about the control of information flow (here is one of my favorite posts on this topic). I suggested that the topic of reframing privacy was a topic for ongoing discussion within the MedX community.
Little did I know at that moment that this would be a panel the following year. Or that I would be on it.
And that’s the beauty of MedX: It’s never the end of a session. It’s the beginning of a conversation.
MedX aims to breaks down artificial barriers between Us and Them, Panelists and Attendees, Patients and Professionals. A culture has been nurtured that invites participation from everyone, whether or not you are in the physical space at the time it is taking place. So much so that even introverts like me are eager to take part.
This year’s panel started innocently (and fittingly) enough: with a tweet. From there it grew into a conversation on what privacy means to each of us, how it’s often hastily applied in many different contexts without consideration of whether there is alignment in how each party defines and interprets the concept. The term is used to drive and divert so many decisions in healthcare, but what do we mean when we use it?
Colleen, Wendy Sue, Susannah, Pam and I believe that this remains an area ripe for debate. We also know that MedX is the perfect space for this type of nuanced dialogue, as it draws a passionate crowd of doers and dreamers.
And by dialogue, I mean all of us. You, too. This is a part of what makes MedX great, and why I am so excited to be returning this year. The conference itself is only a few days, but the movement surrounding it continues indefinitely. In some ways the event feels like a homecoming for a family that I’ve been speaking with remotely throughout the year.
As with the last session, we’re excited to flip the panel and jump-start the conversation. This is just the first post in a series leading up to the panel itself, and we want to know what your thoughts are on the intersection of privacy of innovation. Here are some initial questions to consider:
- How do you define privacy?
- How do you apply it?
- When it comes to social media and other online spaces, have you resigned to give it up entirely?
In addition to blog posts and tweets, we are starting to create spaces to collect and share resources. All that we generate together will be our textbook; a dynamic and vibrant guide to help us shape how we shape programs, products, policy, and everyday interactions with regard to privacy.
We look forward to taking on the topic of privacy. Together. Join the discussion in the comments or on Twitter using the hashtag #medx.
Colleen Young 
I love how you have reframed the idea of privacy in your post, Jodi. I wholeheartedly agree that in the online space privacy is not equated with secrecy but with vulnerability and loss of control of information flow. Learning to navigate the digital landscape while also managing our vulnerability is a skill that hasn’t been considered by many.. When we encourage connection for those with chronic illness in online communities are we neglecting this fear? I am excited about the possibility of broadening the frame in which we see privacy, vulnerability and control especially as they relate to the life of online communities.Thanks for getting the ball rolling on this topic, Jodi.
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Privacy, in my mind, demands a pragmatist’s approach — different philosophies for different contexts. Personally, my privacy requirements are different depending on the space, the context or intent of what I’m trying to accomplish — and most notable, I think, is that our definitions and expectations of privacy may change as we do. As we evolve and new opportunities for sharing unfold we may shift and change our definition of what privacy means and what we’re willing to share.
What we need is systems that facilitate a spectrum of privacy settings and ongoing, dynamic control of how we share our health stories, our insights, our evidence, and our advice. We need clarity around what will be done with our words when we share them and what will be done with our data when we do the same. We really should be able to open up the doors when we feel our stories, data, and health information should be shared while being mindful that there may be changes where we want to shut down sharing from a point in time. As providers and clinicians we also want to be able to share with individuals, with narrow groups and with the public. How we share and how that information is propagated will always matter to clinicians.
My concern is often that “privacy” is misappropriated and often used as an excuse not to innovate or use technology that is patient-centered (and sometimes dually clinician-centered) and helpful as health care centers. We often don’t want to open up communities for peers because we’re so concerned about inaccuracies and “oversharing” — the excuse of “privacy” is usually what impedes us even trying in the first place.
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I love the word dynamic. it’s in my top 10 of words, as it represents purposeful action. It’s the opposite of using something as an excuse, as that implies inaction due to relieving oneself of a duty. I share your concern about the misappropriation of the term privacy, as I think it can be used to make decisions on behalf of others without consulting them first to see if they would agree.
I have no doubts that a dynamic system is more complex to build and maintain. But I don’t see that as the end of a conversation, but rather the beginning of a super interesting one.
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Great post to get the convo started and flip our panel Jodi.
Like Wendy Sue, disclosure of my personal information has evolved and is dependent on the space where I share and the degree of trust I have with the people I share with. Ideally, the control of who sees my information should be in my control, but it isn’t. That’s why I read with great interest the 2 articles shared in this blog.
– Privacy and Publicity in the Context of Big Data by diana boyd (2010)
– Americans Resigned to Giving Up Their Data, New ASC Findings Suggest by Joseph Turow, Michael Hennessy and Nora Draper; UPenn (2015)
As a community manager of online patient communities, I encourage people to share, and witness the benefits of their doing so. I applaud people, like many of the participants at #MedX and #hcsmca, who share openly and as such are pioneering a safer social web.
How might we use privacy by design?
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My first thought in seeing you together again for the most part is Will there be Mayflies?
That leads me to think about all the health information we are dropping like crumbs all over social media. I wonder if, like Hansel and Gretel, our trail of bread crumbs is being eaten by birds, and used for purposes that may run counter to our intentions.
There is always a risk of personal exposure if you make your stories known. Is that worse than the use of big data which can track the frequency of your visits to fast food restaurants and perhaps target you for weight loss ads or a clinical trial about obesity?
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Annette: I love the metaphor of Hansel and Gretel’s bread crumb trail. You ask exactly the questions I intend to ponder, research and flip the panel about in preparation for our panel discussion.
How has the benefit of sharing health information online outweighed the risks of potential misuse for you, Annette? Or have they not?
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One of the benefits of social media is that I can be involved in the conversations about privacy issues and ideas for possible solutions.
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Like Colleen, I like the Hansel and Gretel metaphor as well. Very visual. At the same time, I’m not sure the birds would so much eat the bread crumbs as follow them along, allowing other birds to find them and follow as well… In non metaphor terms, I think part of the challenge is that what we put into public spaces is generally (re)usable for many, not just one.
The risk/benefit question is so central here, and I appreciate you both pondering this point. I imagine the balance changes over time, based upon immediate needs and available resources. For me, one of the great benefits of online conversations (and plain old one way info sharing) is the ability to connect with people you may have never met otherwise. This isn’t new – I have very clear memories dating back 15+ years of conducting needs assessments among transgender populations, and for some being able to find others was literally a lifeline. The same can be said today of those with rare conditions, or those who simply may not have enough support.
So perhaps we’ve traded vital speed for privacy, in some senses, meaning we have our work cut out for us in adapting systems to add back in some transparency around control of information.
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Such an interesting topic!
One of the challenges I think we face in health (and probably in other sectors, but we seem to…I don’t know, agonize over it?…especially as providers) is not only that different individuals have different and evolving expectations of privacy, but that many have different expectations in different parts of their life. How do we reconcile what seems to be sometimes deep but very narrow understanding of privacy and especially privacy on line? People who don’t want their health info shared, but have their Facebook page wide open? Do people even share the same concepts of what constitutes their “health information”?
Like Colleen, I’m pretty attentive to how and where I share information. Health info hasn’t been an issue thus far, but I would prefer that it, like the rest of my info, be more in my control. But I also recognize that most folks don’t read terms of service, no matter how easy they are (and there’s still lots of room for improvement). But even taking care, I’m still surprised by things that happen based on subscribing to a magazine or forwarding my mail. Where was the checkbox to say I didn’t want my address on a mailing list you sell? Where was the checkbox asking me if I wanted a year’s worth of junk mail about moving?
Personally, I’m not resigned to completely giving up what I consider my privacy on line. I do take a lot more time with fine print than I used to for some areas, like my SocMe spaces. I still probably don’t take enough time with that when my software updates come around. I’m looking forward to the discussion!
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