Data Philanthropists vs. Data Police: Shaping ImpInv and Healthcare

We hear the term #BigData everywhere these days. Big data will save our schools, our healthcare system, our civic service organizations and our impact investments. Check out the cool data mapping that’s helping the Capital Area Food Bank (@foodbankmetroDC) use data to reduce real world hunger!

While the ability to collect and analyze data could certainly improve our systems, services and product designs, there is an interesting philosophical divide emerging in both finance and medicine. Ultimately, the debate comes down to whether you believe in people’s ability to achieve enlightened self-interest and want to empower them to use and understand their own data, or whether you think people are stupid and unreliable so helping them means finding ways to remove the human factor to “ensure compliance”. Data philanthropists are motivated by love: love for the world, for fellow humans, for the hope and belief that we can build a better world. Data police are motivated by fear. They start from the premise that people are not to be trusted and that helping them can best be done not by all collectively, but by those few in the know.

Am I being harsh? Perhaps, but the truth can be painful. If you don’t trust people to tell you the truth about household income and consumption, you won’t survey microfinance participants, you’ll focus on creating some kind of quantitative indicator that can pass for “objective”. Let me assure you, this method never identifies the fact that the problem with your savings program is that the male entrepreneurs aren’t saving because their wives would see that not all of their income is going into the family account, leading potentially to the discovery of the husband’s support of a “casa chica” or second household for his mistress – at which point the wife would leave the husband, or ask for a divorce, or cause a scene. Think I’m joking? I am not. This is precisely the type of cultural issue that derails well-meaning access to finance programs.

In the health sector, the data police approach means rejecting any notion of “self-reported” data. You need to get people’s data automatically- through wearables or mHealth apps or from their physicians – so that you can do stuff without their active involvement. When you do have to interact with people, you threaten them, figuring that fear will be good motivation. Check your blood pressure three times a day on this gizmo connected directly to your health insurers casework unit, or face higher insurance premiums. Even when you want to do this, real life may make getting to that tethered BP unit at the specified times a bit of a challenge. Plus, you can’t make meaningful behavior and lifestyle changes if you don’t understand your own data aka your “quantified self”.

With increasing frequency, I’m seeing health and anti-poverty efforts using one of these two strategies to move forward. Which of these statements would YOU find more appealing:

1. Please share your data with us so we can learn about XYZ. We’ll give you access to our research and (sometimes) comparable information about how you compare with others. This tends to be the private sector approach: 23 and me Ubiome, Wellness FX and others (@23andme, @Ubiome, @WellnessFX). You are invited to share and to learn. Services to and for you generally require a fee payment. Research that uses your data requires your consent.

2. Please give us your data so we can learn about XYZ. We’ll provide the gizmo that collects your data and let you know when we publish our findings. You pay nothing and you get nothing in return. Except your data now belongs to someone else. This is how the new national precision medicine initiative seems to be shaping up, sorry to say.

In real life, this dichotomy is increasing healthcare costs without increasing population health.  Colon cancer is a perfect example to illustrate this point. Colonoscopies are the “gold standard”. The FDA recommends that everyone have a colonoscopy done at age 50 and periodically thereafter. Unfortunately, colonoscopies are invasive, expensive and for most people, plain old scary. Various estimates show that somewhere between 30-50% of those who “should” be screened actually are screened. Low-income individuals are far less likely to be screened than higher income cohorts, under 10% in some areas. Colon cancer is the second leading cause of cancer death in the US, with more than 50,000 people dying every year. Screening more people would most likely reduce this number, as well as the associated cost (financial and human).  But how can you screen more people if they refuse to “comply”?

Well, here’s the thing. You don’t have to get people to agree to a colonoscopy to improve screening for colon cancer. There is a very simple non-invasive test that can be done at home at low cost. It’s called the “Fecal Occult Blood Test” (FOBT) test and NIH says it’s one of two acceptable substitutes for a colonoscopy. There are decades of good, internally and externally consistent RCTs that have proven this to be true. The FOBT is not as accurate as a colonoscopy, but offering people the option could encourage screening. A less accurate FOBT is still an improvement over doing nothing. More to the point, maybe in low-income populations we should be promoting FOBT as the best way to improve screening and earlier diagnosis. Maybe we should ALL be doing three years of FOBT, followed by colonoscopies only for those with higher risk – it would certainly lower the up-front cost of screening. How would it impact client uptake?

Side note on the word “client”: people need medical screening and, at times, treatment. These people are not patients, they are human beings: consumers of healthcare and clients of the professionals who serve their medical needs. “Patients” tend to become the objects of medical paternalism. Poor stupid you needs the big smart doctor to fix things. Except you’re not stupid and your doctor may not be able to fix what ails you. I’m a patient if I’m in the hospital. The rest of the time, I’m a human being and I expect to be treated with respect and dignity. My choice of doctor or medical treatment – like my choice of bank or peer-to-peer lender – is my own to make and live with. You wanna play data police with me? I’m outta here!

Sometimes the difference between being a pro-humanity data philanthropist and an uptight data policeman is the simple result of asking the wrong questions. In the example above, the WRONG question is “how do we get everyone to submit to a colonoscopy at age 50″. A better question might be “how do we get everyone to participate in screening and detection programs using the least invasive and lowest cost methods available”?

Not surprisingly, given my background, I am a strong advocate for data philanthropy. Informed consent, citizen/consumer/client engagement, education and empowerment to improve our lives and the world we live in. There are no systems – and no doctors – that have the time or ability to learn all of the relevant details of our personal situations. We must each take responsibility for our own health and wellness: physical, mental, emotional, spiritual and financial.

Healthcare, as with finance, is about risk-reward trade-offs. Your approach to screening and treatment (or credit scores) will be different if you’re single than if you’re married, if you have children or do not. When we follow our values, the trade-offs we make are entirely valid — even if our decisions don’t match what our physicians or our bankers would prefer. Look for ways to join and support the data philanthropists and say no to the data police. It’s your body, your financial history and your decision what you’d like to do to maintain them!

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