Self-care should start with managing your personal digital identity and health information

You might remember Andy Rooney’s iconic voice when he would begin his weekly segment on CBS’ 60 Minutes… “Did ya ever notice…”, and then Andy would inimitably lampoon some issue of the day, whether sacred or mundane. For instance, here’s Andy’s take on health care way back in 2009 when our nation was in the throes of debate on the Affordable Care act:

I hate that phrase the “heath care Industry.” I just don’t like to think of my health as an industry.

So when I asked the questions I am about to explore, for some reason I couldn't help but hear them in Andy’s voice…”Did ya ever wonder why it’s so hard for people to access their health information? The ‘industry’ has got my information, and make tons of money off of it? Why is it so hard for me to get it?”

Why is it that the parts of “health care” involved in delivering care to patients, and those that “pay” for the services rendered and goods, devices, instruments, drugs, etc. are entitled to the details of our health data, but we really aren’t? There’s value in our data, and we as patients are the most important stakeholders who can benefit from it.


Get Your Darn Data!

It is now more important than ever to set aside the time to really get to know the in’s and out’s of your health information. Not unlike getting a handle on your personal finances; you wouldn’t want to wait to get information on a personal financial issue, would you? In most cases, when you really need your health information chances are that it’s not readily available. Memory generally serves us poorly regarding the health details a clinician may need, and the potential you may be unable to communicate is simply higher. So why wait for some health event before we get our health information house in order?

It’s also becoming more important to get your health information in an effort to protect you from the myriad of data breaches, and exposures of personally identifiable information that are being publicised with increasing frequency. Exposure of people’s personally identifiable information numbered in the tens of millions in 2017 even before the mega-breach at Equifax that exposed 145 million individual’s records. With the holiday season in full swing, an increases in scam activity also occurs thanks to all of the gift and charity giving activity during the holidays as scammers take advantage of people’s decreased vigilance during this time.

I recently had the opportunity to participate in an Ignite event with the Technology Association of Oregon with speakers focused on digital health. If you have never seen an Ignite-format event, speakers get 5 minutes, and 20 slides that advance automatically every 15 seconds. A little “different” in terms of the way your presentation is structured and delivered, but a fun way to share. It was also as an opportunity to organize and share my evolving exploration of digital identity and personal health information.

The parts of the talk that I really wanted to dig into were left out because of time constraints, so I am taking this opportunity to flesh things out a bit more. Perhaps the most interesting thing is the way that digital health can augment the “emerging” movement of self-care; a movement that has existed for decades, and that shows evidence of being an area ripe for innovation. Perhaps the most promising area where we, the collective patient advocates, digital health experts and can help people harness to start bending cost and quality curves in the healthcare equation.

My curiosity around data, decentralization and open systems isn’t just a hobby, it’s part of my day-to-day job at YouBase; knowing what’s going on across the spectrum of digital health, patient advocacy, the Payor/Insurance space, public health, government regulation, and emerging innovations.

My recent Ignite TAO Health talk

I won’t get into the politics that surround how we got where we are today, but suffice to say that health data is one of the most valuable commodities that has emerged from massive incentives to get the US health system to adopt electronic health record systems. Almost $30 Billion dollars of government incentive helped spur the adoption of those systems. Billions in government incentives, huge investments in mobile & digital health, and still more spent by the industry digesting massive changes to meet demands of the Affordable Care Act.

With all those resources spent, what often doesn’t make headlines was the ACA’s aspects meant to ignite a renaissance of health data, for patient’s benefit. Arguably, we’re on the precipice of accelerating advances as the data becomes more liquid, as we employ more technologies like AI and machine learning, which will augment capabilities of clinicians and research, alike.

What’s also different today is that work is underway to meet requirements of 21st Century Cures Act, and Medicare Access and CHIP Reauthorization Act of 2015, also known as “MACRA”, are driving regulatory requirements coming into play through 2020 and defining the rules for Medicare payment and quality. As conditions drive more change in the technology, it also represent opportunity. Consumers are becoming more aware of the implications of the way their data is used and traded on, and in some cases misused, by parties for whom they may or may not have given consent. One particular area of improvement, that is of potentially significant value, is advancing the state of interoperability. While many agree that there are few technical barriers to better interoperability, the barriers that do exist are arguably about economics and perception.

Digital identity experts are making advances, driven by two major forces; the need for stronger digital identity online, and how to stem the hemorrhaging of personal data that we see on an increasingly frequent basis. The two are very different problems, however, they are very much intertwined. Interest in embracing decentralized systems and distributed ledger technology, AKA “blockchain” technology is receiving growing attention with decision-makers who are building digital tools to serve the public. While this is spurred largely by growing media attention for cryptocurrencies like Bitcoin and Ethereum, and applications of blockchain in smart contracts, finance, and “Internet of Things. The potential for decentralizing healthcare is becoming a reality, and a quick Google search of “blockchain healthcare” will produce an overwhelming number of whitepapers and material exploring the idea.

At the same time, the technology is getting traction and showing promise for broad applications in the enterprise space, where much of the interest lies is in tracking stuff; goods, things happening as agreed. Blockchain technology enables these trust environments to operate with more efficiency by automating parts of the process that rely on trust and verification. Usually participants in such systems (think Insurance companies, hospitals, doctors, the government) require some central authority, or a small number of vetted players to handle. Blockchain enables the distribution of trust amongst the participants, so the potential to share trustworthy, accurate health data, putting at the fingertips of providers and patients alike in this context allows the stakeholders to collaborate in ways they haven’t been able to in the past, ultimately improving the quality of life for patients.

These conditions are what make it critical that people do everything the can to establish ownership of their personal information and their digital identity; especially your health information.Health information will have an increased utility in relation to using it to help with lowering the costs of health care for yourself and your family. There are a number of other benefits, but making yourself the center of your health data universe, a single “source of truth” around your health record, should be the first step you take when taking charge of your health.

Self Care Revolution

“Self-care”, a movement started in the in the mid-19th Century as a way of making those who need more care, more self-sufficient. Self-care evolved over time to mean many things, but today it refers to the full-circle return to empowering patients to do more of their care, themselves, knowing that patients know their bodies and health better than anyone.

The Iora model has produced dramatic results in the management of chronic conditions. For example, an unpublished Iora study found that inpatient hospital admissions among a cohort of 1,176 Iora Medicare enrollees over an 18-month period decreased by 50%, emergency department visits decreased by 20%, and the total medical spend declined by 12% — this despite the cohort being sicker than average Medicare patients. — The Innovation Health Care Really Needs: Help People Manage Their Own Health

There are many other applications where putting patients health information, and distributed trust together at scale, way more viable and a disruptive innovation. Patients need their data to help them manage and improve their health. Clayton Christensen has even labelled enabling self-care “a disruptive innovation for healthcare.” Arguably, a what is at the core is the need for a trustworthy mechanism for managing consent in a de-institutionalized way.

Many agree that there are zero “technical” barriers to healthcare data interoperability with current technologies; we can agree that those problems tend to boil down to problems of trust; between parties, between “coop-etition” who must, at once, compete and collaborate… #Blockchains, amongst many purposes, should simplify the overhead and reduce the cost of transactions related to process-oriented administrative and adjudication overhead.Decentralization of trust, and support the trustworthy automation of are low-hanging fruit being explored across the Insurance industry. Coming from the Payor/Third-Party Admin/Accountable Care/Health Cooperative world in a past life, in my experience smaller organizations are often able to beat larger administrative concerns because they have less overhead, and are are more effective at managing health in the ERISA’s they manage for the employers they work with. Having a way to shape behavior and use incentives to help lower cost and improve outcomes. Improving health on a more localized basis tends to have a deeper effect.

So when the questions like “why would patients want their health information” arise, consider the potential for how the present conditions make that data more useful than ever.The potential for an era of “regenerative health” is coming into focus and can replace the current “extractive” system and business model, improving things for us individually as well as a society.