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What Does Screening Your Phone Records Have To Do With Health Care?

June 25, 2013

I have been following  the news about the National Security Agency (NSA) access to our phone records with great interest.  If we as a society don’t sort some of this out, we’ll see a repeat in the health sector a few years from now.

These discussions seem to pivot on issues of population-level safety vs. personal liberty, and on trust vs. suspicion re: how much of the process is driven by machine learning vs. individuals.

It is interesting that the story about the scanning of phone records came out close to reports about the IRS targeting certain non-profits.  The two are quite incendiary when it comes to paranoia around privacy.

As a Boston area resident, I was also quite puzzled by criticisms that our surveillance processes were not good enough to prevent the marathon bombings.  I have to wonder if these same folks were then chafing at the possibility of having their own phone records scanned. What is good for the prospective terrorist is bad for the average citizen, I guess.  This logic assumes we know who all of those prospective terrorists are and thus we should just keep track of them and leave Joe Average alone.  Can it get any more naive than that?

To the government’s credit, they have sought to clarify how the phone records scanning program is automated and that this sort of thing has been going on for years.  Those making noise seem to think that some group of unauthorized employees is pouring over our phone records, one by one, to pick out embarrassing or incriminating data about us.  Seems far-fetched to me, but I can see some of this fear after the IRS debacle.

The best stories on this, though, have contrasted the issue I raised above – population-level safety vs. individual liberty.  The NSA has pointed out in a number of places how many terrorist attacks were thwarted because they had access to these phone records.  This seems like a good thing to me.  It makes me want to ask, “If you aren’t participating in criminal activities why do you care so much that the government has access to these records?”  It’s a rhetorical question, but worth pondering at some level.

So how does this relate to health and connected health?  It is parallel in many ways to the conversation playing out right now.  At the Center for Connected Health, one of our programs, called Diabetes Connect, allows patients with diabetes to automatically upload their glucose readings and get periodic feedback from a diabetes nurse educator.  Some patients like the feedback loop and, as a population, they all do better.  However, some stop using the system entirely.  They say things like, “I don’t want my doctor to know that my sugars are running high” or “it reminds me that I’m sick so I’m not doing it anymore.”

This psychology is, to me, reminiscent of the individual who says “protect my privacy at all costs, even if we might miss a few terrorist bombings.”

Connected health and its intendant feedback loops create the opportunity for goal setting and achievement for the motivated individual, but they also create an accountability that can make some people uneasy.  By way of analogy, I don’t mind the NSA reviewing my phone records because I have nothing to hide.

The direction in which our Center is headed involves capturing lots of data about you (not unlike the government scanning your phone records) and using that data to generate customized, motivational messages to keep you engaged in improving your health.

The logical conclusion may be scary to some.  When we cross the threshold to mobile purchasing, for instance, we’ll know if you bought a Dunkin’ Donuts breakfast sandwich for breakfast and a big slice of cheesecake for lunch.  If you have diabetes, these choices might have dire downstream consequences.  Is this level of monitoring too invasive? Remember, society has to pay the cost of your diabetic retinopathy and your chronic renal failure if you don’t care for your diabetes.  This is why I say the analogy of tension between population-level safety and individual liberty is a ripe one.

In health care, I can envision having a system where one trades privacy for premium fees.  You can keep all of your data and behaviors private if you pay a higher insurance premium.  There are some precedents for this in the auto industry.  I don’t know what the answer is with respect to phone surveillance and terrorism.

As a society, we need to be better educated as to how data can be used to our advantage, whether it be our phone records to identify potential crime or our health data to prevent disease like hypertension or diabetes.  In the case of health care, it’s not just about doctors or insurers ‘spying’ on you.  Our own personal health data can be a treasure trove of information that can help us all live healthier, better lives.

How do you see it?

11 Comments leave one →
  1. June 25, 2013 1:26 pm

    Great topic, great point of view.

    I think at the very core of the issue lies “cultural change”. We are moving from a passive perspective on health to one of active engagement.

    Passive being the legacy “sick-care” model that has been so widely discussed in recent years. The role of the consumer in this model is somewhat “out of sight/out of mind”. Take health for granted until something goes wrong – then any and every possible treatment, innovation should be leveraged to “fix it” – cost is no option.

    Active being that ideal environment where consumers actively monitor their health, certainly comply with protocol if they’re managing a condition and take proactive steps (activity, diet, etc) to optimize health.

    During the transition period we’ll need a combination of incentives and easy/consumer friendly products and services that make active health management easy and ultimately a routine part of life. Of course a core requirement for “active care” is the much more aggressive use of information/health metrics to help consumers understand their health status, changes over time and indications for when it may be appropriate to “take that body in for a checkup”.

    The reality will be a typical market adoption cycle. Early adopters will engage for reasons ranging from personal motivation to qualifying for benefits/incentives. The first wave of early adopters will lead to the second and third waves. Some will never engage. That is where I believe your observation is spot on – “if you want to fully protect your health information, not proactively monitor/manage your health, then there are options available and those options come at a price/premium price”.

    We can never reach a point where we discriminate on health issues, but we certainly can reward those that do everything they can to manage their health and penalize those that never engage in their own health.

    We, “the industry” have to make it extremely easy for people to engage and we have to educate people relative to the benefits and risks of more effectively using personal health information.

    • June 26, 2013 9:34 pm

      very nicely stated. thanks for this lengthy, well thought out addition

  2. June 25, 2013 1:38 pm

    Interesting dichotomy Joe. It reminds me of living in Italy where before undertaking building works I was required to sign an official declaration that I was not a member of the Mafia. So tempting to write, New roof request, Don Corleone.

    Point taken on paying higher premiums for privacy but then with proposed health rationing (this week the UK British Medical Association proposed fees for certain types of intervention) the cost will impact the ‘less healthy’ individual one way or another. Add to that a chunk of genetic screening and I imagine that insurance will become as personalised as the treatments that are data driven. And the genetics are much harder to control than lifestyle.

    What interests me is whether personalised data will actually enhance the individual motivation to change behaviour or not? So, if you are presented with an image of your lung or heart that reflects your lifestyle choices and genetics will it have a lesser, greater or no impact on your choices? If you are then able to see what happens to your organ without and with lifestyle changes (and, in time, genetic engineering) will that impact your behaviour?

    And then what if your employer or college or family and friends have access to those images too? Will this create a network of support for you to shift behaviours or create a punitive or nagging society?

    Perhaps two of the most intimate relationships that we have in life are with privacy and safety. The latter I think mirrors our relationship to risk. I am less sure of the opposite of privacy – it appears more nuanced. And in writing that I wonder whether those who seek privacy feel more safe in some way; less at risk of exposure. That would certainly reflect many members of our services at Big White Wall. We are in the data capture and personalisation world too; as a means of reflecting back patterns that are damaging – both mental and physical.

    I have no answers but I believe we have entered a new paradigm where certainties are less so and individually we have to set boundaries around our safety and privacy that were previously much more externally determined.

  3. June 26, 2013 2:18 am

    Reblogged this on lava kafle kathmandu nepal <a href="; rel="publisher">Google+</a>.

  4. Cheryl permalink
    June 26, 2013 2:34 pm

    Be careful of assumptions . . . Just because an individual doesn’t want to publically share his/her health data, that doesn’t necessarily mean s/he is not personally engaged in maintaining a healthy lifestyle. A better model might be to link insurance premiums to health levels/outcomes (rather than whether or not a person agrees to monitor/share personal data.)

    Also, the question of motivation is a good one. Most people know when they are engaging in unhealthy behaviors (e.g. will I pick a burger and fries or a salad for lunch?) and they don’t want to be micro-managed about every choice they make throughout the day. Compounding this is that we are not immediately faced with the consequences of these choices (e.g. we may get sick sometime in the distant future). Thus, long term behavioral changes continue to elude us.

    • June 26, 2013 9:37 pm

      How would we be able to link premium costs to outcomes, if the individual was not willing to share his or her information (i.e., his/her outcomes)?

  5. Monica S. Gilbert permalink
    June 26, 2013 9:31 pm

    Intriguing subject… one which inspires me to comment. I believe data can be used in healthcare to create big advantages for patients, families, and communities. When data/information is put together in meaningful ways, we have the opportuntity to uncover incredible insights and knowledge. Those insights may be relevant at different levels… individuals, families, population groups and/or communities.

    At the individual level, most of us have much to learn and appreciate about ourselves: our habits, our risks, our health/well-being, our needs, and our preferences. One challenge (of many) is to find the best way(s) to inspire people to care about making connections that lead to self-awareness, personal insight and knowledge, and that motivate people to proactively self-advocate for their needs and preferences.

    We have a long way to go, but I believe personal data/information can accelerate our progress. We need to understand patterns over time, from our own data and from others, which can provide context for understanding behavior and the consequences of behavior. We are all different and our journeys are different. I see opportunities to manage through “generalizations” in healthcare (about populations, behavior, disease, health, etc) by integrating more personal insights into conversations.

    Think about how engaging a conversation can be when these connections are made…

  6. July 2, 2013 7:50 am

    This is a great topic. I think the question pivots on how much can we trust that the government is (and always will) use this information just to stop terrorists. Or, will they begin using it to thwart political dissent, distort private information to discredit others for political purposes, etc?

    Same for healthcare. I’m fine with my doctor knowing I didn’t take my medication and reprimanding me for that when I come in again, but the comfort with this type of thing changes if laws change that allow our government to penalize people financially for eating a hamburger…etc.

    So, it is not so much the technology itself, but how we use it obviously – we need good policies and checks and balances in place and a certain trust level with our government.

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