Health inSite: Privacy, Security, and “What’s with my damn data!”

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I will be moderating a tweet chat on May 16th with the crew that participates in #HITsm (Health Information Technology / Social Media) and thought I’d go ahead and post those here for anyone else that might be interested or wanted a teaser for that chat.

These topics will be cross-posted on the HL7 Blog for TweetChats closer to the event.

We live in a data-damp world.  While we’ve always generated tons of data, never has it ever been so catalogued and retrievable.  We have begun a shift in our willingness to allow outside groups to do this for us in some cases, for example, in cloud-based applications, social networks, and the like.  It’s not true for everyone, but there’s no question there’s a shift in our culture toward allowing more of this.

#HITsm T1: Is releasing more a/b ourselves an increase in trust, or risk-taking? Is that a positive thing? How is it impacting healthcare?

Some might make the case (myself included) that this is a positive thing as we continue to share ourselves in a way that allows our impact on each others’ decision-making to become more transparent (blog posting) and potentially affect-able.

#HITsm T2: What is the balance between transparency and privacy/security that makes sense when it comes to healthcare? How?

Twitter Head of Safety, Del Harvey (@delbius), recently gave a TEDtalk about how the scale of Twitter requires significant considerations in how Twitter protects its users, in many cases, from themselves.  For example, Twitter made the decision to remove geo-tagging meta-data from photos that are posted to Twitter to ensure that users could not be tracked live as they posted information.

#HITsm T3: What patient data in healthcare may be innately helpful or harmful to safety/security, known or unknown? Examples?

If we accept the premise that some information should be shared for the benefit of the social network (friends, family, neighbors, etc.) in terms of how behaviors affect the health and wellbeing of all who access the healthcare system (effectively all citizens under the Affordable Care Act), who should set what/where/how that information should be shared?

#HITsm T4: Who should control access to data re: healthcare info? Should there be suggested min. shared data? What parallel models exist?

In a somewhat humorous interview with former NSA chief Keith Alexander on his HBO show “Last Week Tonight,” John Oliver asked if recent outcry regarding privacy among the US population was simply a branding issue for the NSA to which there was some assent from the former head.  Sarcasm aside: there may be value in rebranding the healthcare system to focus on increasing sharing to leverage shared health decision-making.

#HITsm T5: If we want to increase sharing data to leverage shared #HC decision-making, how can #HealthIT and #SoMe help?

Have thoughts you want to share? Feel free to comment below!

To our health,

Ryan Lucas
Manager, Engagement & Development
Follow me on twitter: @dz45tr

Health inSite: Decisions and Privacy

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There is a shift in healthcare related to our concept of privacy that is sorely needed – and it’s probably a little different than what you’ve heard from a lot of groups/people around the web.

We need to stop thinking about healthcare as a private thing.

As far as information about us, it’s simply no longer acceptable to consider our lives as private.  Not in a time where we actually understand our social network to such a degree that we can accurately and effectively map our connections in the social network (not like Facebook but friends, family, co-workers, neighbors, and the ‘guy at the gym’) and understand how we consciously and unconsciously make decisions about how we behave.  These behavioral changes manifest in health outcomes and as we move to a healthcare system (rather than a sickcare system) what you do is what you are – or more precisely what you are going to become.  Now, I’m not saying you shouldn’t be protected from abuse or discrimination or anything like that, but functionally, your decisions every single day are going to have an impact on more than just you; you owe some accountability to your social network (and they to you) as to what your decisions are doing every day, because Community is the Key to Health.

You may not know it yet, but what you decided to eat for lunch today (if you ate lunch today – and for some of you that might not even be the case) was decided long before you actually ate your lunch.  Here’s a non-exhaustive list of the ways in which this decision was made before you actually ate it:

Schedule: The structure of your day had an impact on what you ate for lunch.  Did you have a co-occurring meeting and therefore ate a “bagged lunch?” Did you have a meal prepared ahead of time – and if not did you have to throw a lunch together this morning before leaving, or did it force you to “forage” for a lunch?

Environment: Consider how the environment surrounding your lunch impacts your lunch decision. Did you run out for lunch because you needed some fresh air or a break from the office?  Do you have a place where you regularly eat lunch and therefore have a system for preparing for that meal each day – conversely, did that get interrupted for this particular lunch by environmental impacts like bad weather or the space itself was occupied in a way that prevented you from following that regular schedule?

Social Impact: For some, eating lunch is a social activity.  Do you have a regularly scheduled lunch partner? Was that true today?

Resources: Money and time as resources have an impact on the structure of lunch.  How do you use these resources in an intentional way related to your lunch habit? Do you spend money at a restaurant / court / vending machine each day or bring your lunch?  Do you have the resources of time and money to prepare ahead or use those resources to forgo preparing ahead?

And let me tell ya’, this isn’t even the beginning of the ways that this could be further expanded.  Think about all of the ways that a single meal is planned and replicate that process for each decision you make today.  Exercise, nutrition, social activities, occupational activities, mindfulness activities, financial decisions, personal intellectual development, etc. etc. etc.

Now think about this: why did you make those decisions?  Consciously or not, you may have made those decisions because of someone else.  Did your partner pack your lunch and therefore help to make the decision of what you’re eating – or was shopping not prepared in a way to pack that lunch in the preferred way?  How much of your diet is based on someone else’s decision?  Maybe your doctor suggested a change in your diet?  Maybe you or a family member has a dietary restriction that changes your diet on a daily basis.  In the case of a family member’s restriction, maybe your lunch is the time when that restriction doesn’t apply to your personal diet?

Lastly consider this: Can you push yourself to make a given decision either by limiting or adding options?  Can you change the options you have available at the point of decision-making with a little bit of foresight?  Try to find one example of a way that you can “pre-decide” by removing the alternative option.  Maybe one of the questions above can be flipped to help you make a “pre-decision” that will help you make a single, healthier decision this week – even if it’s only once.  You might find it’s pretty easy to do and may be a powerful way to change your behavior in a positive way.  And then consider the flip-side of this.  How can you help someone else through a “pre-decision” that helps someone in your social network make a decision that is healthier for them?

Here’s what I’m saying, and to slightly alter a quote from Cloud Atlas:

Our health is not our own. We are bound to others, near and far, and by each decision and every sharing of those decisions, we birth our health.

It’s time for us to stop thinking that we are fully separate members of society that don’t have an impact on others and start being accountable to one another for how the decisions we make impact others – and vice versa.  Yes, even in health.

To our health,

Ryan Lucas
Manager, Engagement & Development
Follow me on twitter: @dz45tr