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

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Health inSite: #4PHealth

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Each week I take an hour to join with a few colleagues and thought-leaders around the world on twitter to discuss all kinds of interesting topics related to where healthcare is going, what to expect in the intersection between Health and Technology, and how we might play a role in that changing landscape. These TweetChats are an opportunity to learn, share, and ultimately understand how social media, technology, and the role of various players in the healthcare world might better work together. Often, we turn to the topic of patient engagement. This is focused on what tools, technology, and other needs might help to get patients more involved in their own health. This can come in the form of tracking various metrics (see the Quantified Self movement) to making sure that individuals on medication are staying on top of that treatment to ensure their continued health improvement. While in our last TweetChat, which emphasized Patient Engagement and Experience specifically, we discussed that it was important for us to focus on what the patient could do, yes, but also what the provider and the payer could do. This is a common picture of the players in the healthcare world. Someone needs the service (patient), someone provides the service (provider), and someone pays for the service (payer). It looks sort of like this:

#P3Health

But that’s not really the whole picture, now is it? The truth is that this is the model of a sick-care system. As I’ve mentioned in blog postings beforehand, in order to keep people as healthy as possible before they need to access the healthcare system, the system must account for one more “P” in this proverbial puzzle (or pie, if you’d like!); one’s Peers:

#P4Health

It’s the convergence of all four P’s (Provider, Payer, Patient, and that Patient’s Peers) that will allow for greater healthcare reach. When the Payer and the Provider are able to engage the Patient’s Peers, then true health generation is possible and the benefits of one’s social network can then be fully leveraged.

With that, I submit a new hashtag for the consideration of a community that continually strives to make the very complicated healthcare system a little simpler as we move towards greater total health and wellbeing of the individuals that have to access this system. #4PHealth represents the four core stakeholders in healthcare that ultimately are responsible for the health of the patient and responsible for keeping that patient out of the hospital, involved and engaged in their total health and wellbeing, and always striving to improve one’s total health picture. When the Patient, Provider, Payer, and Peers come together, total wellbeing is possible.

This doesn’t have to be limited to the TwitterSphere, though. Take a moment and think about the real-world applications of this for you in your life. What can you be doing to help those in your peer group become healthier? What opportunities are there for you to help generate greater health for yourself and for your friends, family, and coworkers? What can you ask of your peers to help you with to create better health for yourself? The 4P model may not be the easiest thing for us to accomplish in our current healthcare system given the disjointed nature of care models, but you still have the ability to start working on the fourth “P” today. What will your first step be?

To our health,

Ryan Lucas
Supervisor, Marketing
(illustrations assembled myself!)

Health inSite: Placebo, by any other name, is just as effective?

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The Placebo App

A review of a year and a half of Health inSite research and how I think one group is probably more on target than some might think.

I’m going to start out by laying out a couple of concepts for review.

Placebos and psychology

A placebo is defined as “a simulated or otherwise medically ineffectual treatment for a disease or other medical condition intended to deceive the recipient.”  This causes what is called the placebo effect.  A patient is said to have experienced a placebo effect when the intended deception manifests experienced results.  While the research indicates that there is a small range of people that are susceptible to the effect, that range hovers at around 30% of the population.

Rationality

One might ask, “How is it possible that the effects of a non-drug could be experienced as having the results of an actual drug that has the intended, or actual, impact on a patient?”  This is explained as the product of self-fulfilling prophesy, or a form of expectation bias.  If you recall the previous posting on Thinking Fast and Slow, one of the difficulties we face as human beings is both our difficulty in matching up experience and memory, as well as overcoming biases that tint our understanding of rational data.  In a word, we are not always rational beings and sometimes our understanding of an experience or idea is subject to our memory and cognitive constructs that allow us to think fast.  We respond the way that our mind has told our body it expected to experience the event.  The concept, “Where your mind goes, the energy goes,” has been mentioned extensively by my colleague Dr. Mines in his series on Psychology of Performance, beginning with his first posting.

Hysteria (or mass psychogenic illness)

If you happened to miss the events in Le Roy, NY, where 18 people experienced Tourette’s-like symptoms for an extended period of time, there were many that identified the cause of the experience of these individuals as mass psychogenic illness.  Mass psychogenic illness has been largely attributed to situations in which individuals are experiencing similar physical effects (tics, for example) without any clear physical reasons (e.g., environmental toxins, viral or biological triggers, etc.).  Historically, this has been referred to as mass hysteria.  The complexity of the condition has led many to write it off, but the core assumptions of mass psychogenic illness are sound given what we know about social influence.  Oftentimes in mass psychogenic illness, an index case is discovered in which someone’s conversion disorder acts as a catalyst to the development and spread of the illness through the network.

Assuming that this is the way in which mass psychogenic illness works, index cases could be used to induce behavior change in a network towards a positive outcome. In this way, it is not mass psychogenic illness, but mass psychogenic salutogenesis (widespread generation of health through the influence of the mind over the body within the social structure of a network).

CBT and treatment adherence

Critical to adherence to any health maintenance or treatment protocol plan is the ritualizing of new behavior.  In the chemical dependency field, we’ve known this for a long time.  By creating new routines that positively impact our behavior; we are able to more easily overcome the many triggers that previously caused our substance use.

Triggers are defined in the substance abuse field as events, emotions, or thoughts that trigger the addiction response.  They are a major focus in many treatment protocols and are especially important for recognition in the cognitive behavioral therapy (CBT) model.  The goal in CBT is to identify why it is that we respond to thoughts, emotions, and events and then to develop, for ourselves with the help of a therapist, ways to counter the effect of those triggers.  In this way, it’s not the abolition or avoidance of triggers so much as a rational understanding of the trigger and building tools to overcome that trigger’s effect on the coached patient/client.

Network theory, social comparison, and braggadocian behavior

If you’ve read all of the links to other blog postings in the Health inSite category, but missed the posting on braggadocian behavior, the concept is very simply that social media has enabled us to engage in bragging around the things that we are doing and that this activity can influence the way that others perceive us – and we do this to intentionally accomplish that change in perception.  This gives us the ability to influence the way that others behave as they engage in responses which may include trying to match our behavior (wittingly or unwittingly)  or rejection of our behavior as a method of coping with one’s own deficiency in the category of behavior being expressed.  This has a powerful impact on the social network in which agents operate as they can directly and indirectly influence the behaviors of individuals that are proximally or distally connected to them.

In their book ConnectedChristakis and Fowler explore the significant effects that our social network has on our health and health behaviors.  Social networks, of course, are not just websites like Facebook or Twitter, but all forms of interaction that we have with various people in our lives, including our family, friends, co-workers, neighbors, and even the people at the grocery store.  The power of individuals to have an effect across a network based on their location within the network is a clear and well-documented reality.

Suspension of disbelief

As I mentioned in an earlier blog posting on the fourth and fifth wall, suspension of disbelief is critical to the effectiveness of theater.  Without the audience allowing suspension of disbelief, a presentation falls flat in its ability to engage the audience emotionally.  Think back to a PowerPoint presentation that was particularly awful because the speaker failed to actively paint a picture that the audience could connect with.  Similarly, engagement strategies are starting to use these concepts to create thick tapestries of story that immerse the audience in the story-line, and even sometimes ask them to co-create the story, as in the case of the Lizzie Bennet Diaries spin-off series, Welcome to Sanditon.

New technology

Recently, an IndieGoGo campaign was started for a new project that would create a placebo app.  You might think to yourself, “How the heck could a placebo app affect someone’s health?”  The app, which leverages the power of mirror neuron activity and the placebo effect by creating positive thought-feelings in the brain, could actually override the systems in the brain that cause us to act irrationally in terms of triggers and cognitive biases by leveraging suspension of disbelief.  Further, the app allows individuals to interact with their social network around their use of the placebo app, creating a unique opportunity for mass psychogenic salutogenesis.  Now all we need are some index cases to start the process toward a tipping point.

It will be interesting to see the resulting data from this project as we would expect that there is a real opportunity for this to be leveraged to significant effect, not only for those directly accessing the placebo app, but also those that end up interacting with those users.  But the rest of the story is still to come.

Whew, that was quite a round-up of research, huh?  Comment or send questions!

For more…

…check out a G+ Hangout from HuffPost on placebos and their effect.

Ryan Lucas
Supervisor, Marketing
To stay ahead on topics related to this, follow me on Twitter @dz45tr

Health inSite: Breaking the Fifth Wall

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A refresher on Alternate Reality Games, Transmedia Storytelling, and Engagement

While I highlighted the opportunities with Alternate Reality Games and Transmedia Storytelling in my last post, I wanted to take a moment to share a recent production that I’ve been looking into that really highlights how this format works: The Lizzie Bennet Diaries. The Lizzie Bennet Diaries (LBD) is a modern retelling of Jane Austen’s Pride and Prejudice.  The characters in the story have their own online presence within various social media outlets and interact with one another through Twitter, Tumblr, YouTube, ThisIsMyJam, Websites, and more (various examples shown).  The characters share their stories with one another through these dynamic media and oftentimes interact with the audience as well.

While this has engaged a pretty significant audience (fandom), what is really incredible is the way in which the audience has begun to participate with one another.  A recent update to the story included new information that Lydia Bennet (Lizzie’s youngest sister in the updated version) has been caught up in a sex tape scandal (remember, this is not meant to be perfectly along the storyline that Jane Austen wrote, but one that resonates with the audience of this retelling).  There was a huge outcry from the audience expressing dismay at this turn of events.  So much so, that that there was discussion the fandom should look for a hacker who would be willing to hack the website on which the video’s seller was collecting interested buyers with a countdown clock.  This created an immediate problem for the producers/writers of the story.  If the site indeed had been taken down, the team would have to develop a way to get around the change in the storyline created by the audience, and at great expense.  In this way, the audience collaborated to solve the problem of the character, rather than maintain their understanding that this was simply part of the story for consumption.

Let’s start with the Fourth Wall

In theater, the Fourth Wall is the theoretical veil between the audience and the stage.  Breaking the Fourth Wall happens when the players on the stage actively communicate directly to the audience.  There are countless examples in which the magic of the story playing on any stage (screen applies here too) is broken in this way, but the practice is increasing with evermore prevalent new media projects.  In my last post, I described Transmedia Storytelling and Alternate Reality Games as a way of telling a story through multiple media streams and its ability to engage an audience in new and immersive ways.  But breaking the Fourth Wall can be used to engage the audience in participating in the story through these methods to expand the value of the experience that the audience has.  For more on the Fourth Wall, check out Wikipedia for a quick overview, or TV Tropes for all kinds of cool information about the idea and the way that the  this device may be used.

Now, to the Fifth Wall

There is another proposed wall which has been less well explored, and often debated as to its name: The Fifth Wall.  The operational definition that I like is the veil that separates members of the audience from one another.  For a long time, the audience has been the passive observer of entertainment with notable exceptions of breaking the Fourth Wall.  But, rarely does a media experience really ask for members of the audience to work with one another.  This concept of the Fifth Wall could have significant implications in the sharing of narrative within an Alternate Reality Game with a true Transmedia Story backbone.  Consider the opportunities of having participants in the audience that can help guide the story cooperatively; sharing goals, pushing one another toward success, battling challenges together.  If your friends’ friends impact your health in positive and negative ways (see previous posts about link influence here), what about engaging a first node relationship more directly to change the perception of the second or third node to ripple back through the network to you.  In this way, the network then begins to course with change and as you make changes that influence others, their responsive changes come back to you.  In this way, helping others get healthier helps you get healthier.

The Walls and their implications within LBD

The surprising situation that happened within the LBD is that while the narrative has been so clearly billed as a story, with many instances of the Fourth Wall being broken (the producers actually have entire blog postings dedicated to talking about the production process as it is occurring), it turns out that the Fifth Wall nearly took down the production.  The audience reverted to a sense of belief as they interacted with one another.  The characters, then, are part of the audience – and the audience part of the characters.  This creates a shared experience where the audience felt that they were responsible for helping solve the problem for the character.

Summary

The investment of the audience in their shared experience (this includes characters, as mentioned above) has huge implications for health programming.  Imagine a story with so much motivation and movement as LBD written to achieve Salutogenesis by creating a shared landscape around health behaviors.  If we know that education, knowledge, and external incentives are not motivations for behavior change, is this the next landscape to try?  We think it is.

To our health,

Ryan Lucas
Marketing

Health inSite: Social Media Access at Work

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Let’s take a moment to discuss the great ‘Social Media at Work’ debate.  You’re familiar, I’m sure, with this concept.  It starts with a question like this:

“Why would we allow our employees to spend ‘work time’ doing things other than work?”

or another popular alternative,

“Do we want to allow employees to engage in social networking where they could release PCI (a play on PHI in the health world, Protected Health Information: Private Corporate Information).”

or the myriad other great arguments for canning social media in the workplace.

In 2011, MINES had the great honor of presenting at the EAPA International Conference on Wellness Programs where we posited an alternative to traditional wellness programs that relied on the value of social media with employees as a means to increasing adoption, bolstering adherence through social relationships, and positioning health as a social venture where people are spending increasing amounts of their free (and yes, even work) time engaging in health.  The core of most Wellness programs is similar to that of traditional EAP; a sort of ‘we’re there when you need us’ or ‘wait-and-see’ approach.  Wellness programs, however, often incentivize participation through monetary carrots or sticks.  This is a one-to-one approach to health.  Those of you that get to play with relational databases, however, recognize that there are many ways to connect entities (data, people, sites, etc.).

Social Media has the ability to act in a many-to-many way; that is, connecting me to my friend, and my friend’s friend, and all of us to an expert (be it a website, user, resource, or anything else) to engage on a topic.  This is an extremely powerful tool that is starting to be leveraged by a handful of companies – similar to the group therapy model where part of treatment is engaging with other individuals that are currently in treatment, rather than solely with the doc, therapist, CAC, or sponsor.

At the conclusion of our presentation, an attendee posed the following question during the Q and A:

“My company doesn’t allow access to Social Media at work, what recommendation do you have for a company that wants to consider leveraging Social Media but its’ employees don’t have access to it.”

The answer from our CEO went something like

“At MINES, we’ve created a culture wherein every employee is expected to do their best.  I trust that my employees are doing just that and see that they do their best every day and until I see different results, I trust my employees to not abuse the system.”

Let me take a quick moment to highlight this infographic from the University of Melbourne (et. al.) which highlights some of the points on this subject.  Restricting Social Media at Work has many great arguments on its side; potentially lethal viruses, decreased bandwidth (the tech kind, not the personal productivity kind), and even legal concerns regarding PCI.  Productivity is a really common go-to, however, and the others are extremely valid.  Further, I don’t have good arguments against them (besides increasing your company’s bandwidth, installing good anti-virus software, and educating your employees on safe browsing habits), so let’s talk about the increased productivity experienced by those with unfettered access to Social Media.  Could these quotes be right?

“Short and unobtrusive breaks, such as a quick surf of the Internet, enables the mind to rest itself, leading to a higher total net concentration for a days’ work, and as a result, increased productivity.”

That’s pretty interesting and kind of common sense when you think about it.  Looking to an interview with the guru of productivity, Tim Ferriss, on LifeHack is the argument that we should…

“Take frequent breaks and strive to constantly eliminate instead of organize.”

So, despite all of the many reasons to not allow employees onto these Social Media sites, here we see the interplay of increasing productivity by taking breaks, and Social Media as an opportunity to boost creativity and rest the mind.  It’s certainly interesting.

Keep in mind; we’re not suggesting that every company, organization, or government entity allow unfettered access to social media sites.  We recognize that many of the groups that we work with each day have significant and valid arguments to be made as to why they do not allow access from a workstation provided by their IT department; but most arguments are worthy of reexamination as new information becomes available and the growing trend in BYOD (Bring Your Own Device) will have significant consequences as well when it comes to the Social Media, or WILB (Workplace Internet Leisure Browsing), debates – a topic we’ll tackle in the next iteration of Health inSite.

To Our Health,

Ryan
Marketing