Whose Data is it Anyway?

privacyA common and somewhat unique aspect to EHR vendor contracts is that the EHR vendor lays claim to the data entered into their system. Rob and I, who co-authored this post have worked in many industries as analysts. Nowhere, in our collective experience, have we seen such a thing. Manufacturers, retailers, financial institutions, etc. would never think of relinquishing their data to their enterprise software vendor of choice.

It confounds us as to why healthcare organizations let their vendors of choice get away with this and frankly, in this day of increasing concerns about patient privacy, why is this practice allowed in the first place?

The Office of the National Coordinator for Health Information Technology (ONC) released a report this summer defining EHR contract terms and lending some advice on what should and should not be in your EHR vendor’s contract.

The ONC recommendations are good but incomplete and come from a legal perspective.

As we approach the 3-5 year anniversary of the beginning of the upsurge in EHR purchasing via the HITECH Act, cracks are beginning to show. Roughly a third of healthcare organizations are now looking to replace their EHR. To assist HCO clients we wrote an article published in our recent October Monthly Update for CAS clients expanding on some of the points made by the ONC, and adding a few more critical considerations for HCOs trying to lower EHR costs and reduce risk.

The one item in many EHR contracts that is most troubling is the notion the patient data HCOs enter into their EHR is becomes the property in whole, or in-part, of the EHR vendor.

It’s Your Data Act Like it
Prior to the internet-age the concept that any data input into software either on the desktop, on-premise or in the cloud (AKA hosted or time sharing) was not owned entirely by the users was unheard of. But with the emergence of search engines and social media, the rights to data have slowly eroded away from the user in favor of the software/service provider. Facebook is notorious for making subtle changes to its data privacy agreements that raise the ire of privacy rights advocates.

Of course this is not a good situation when we are talking about healthcare, a sector that collects the most personal data one may own. EHR purchasers need to take a hard detailed look at their software agreements to get a clear picture of what rights to data are being transferred to the software vendors and whether or not that is in the best interests of the HCO and the community it serves..

Our recommendation: Do not let EHR vendor have any rights to the data – Period!

The second data ownership challenge to be very careful of is the increasing incorporation of patient generated health data into the healthcare delivery system. We project an explosion in the use of biometric devices, be it consumer purchased or HCO supplied, to monitor the health of patients outside of the exam room. Much of this data will find its way into the EHR. Exactly who owns this data and what rights each party has is still debatable. It is critical that before HCOs accept user data they work out user data ownership processes, procedures, and rights.

If the EHR vendor has retained some rights to data the patients need to be informed and have consented to this sharing agreement. In our experience this is rarely if ever explicitly stated. HCOs need to be careful here as this could become a public relations disaster.

We are not lawyers, we are offering our advice and experience to HCO CEOs, CFOs and CIOs, from the perspective of business risk and economics. At Chilmark we have deep experience in best practices used in other industries with regards to data use and sharing agreements. We have also spent significant time reviewing the entire software purchasing lifecycle and culture, and are here to help HCOs in reviewing these contracts.

Addendum: Rob and I worked together on this post but our WordPress backend doesn’t like to do co-authored posts.

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At the Intersection of Obesity and HIT

We Americans are on a very terrifying path, health-wise, based on the latest obesity projections from RWJF.

Medical “innovations” around the obesity epidemic are unsettling, to say the least. Most recently, Dean Kamen (of Segway fame) filed a patent for a self-serve Stomach-Pumping Machine.

Disturbing medical devices aside, what does the obesity crisis mean to healthcare IT (HIT)?  Yes, increasing obesity rates means more metabolic syndrome, more intervention, more biometric data,more data stored in EHRs, more HIE to share that data, more clinical analytics and care coordination software, …

Does this sound interesting to you?  In my research I am more focused on how technological innovation can function as a solution to the obesity crisis. First let’s consider the payers — the large, innovative ones who continue to rally for behavior change.

Payer-Sponsored Wellness & Patient Engagement Soldier On

Payer-sponsored behavior change programs have never sustained results in the long term, but this doesn’t stop the early adopters from soldiering on.   For our 2012 Payer Benchmark Report, we profiled several large, innovative payers working to engage their members and the public through low-cost consumer technologies.

Some interesting new developments in this space include:

  • Aetna is looking to make running on a treadmill bearable. Its new ‘Passage’ app (storing data in CarePass), promises to make exercisers feel as if they are travelling within a city of their choosing.
  • Cigna has just released a ‘Healthy Living App Pack’, bundling the extremely popular FoodEducate app with 3 less-popular ones.  (Cigna didn’t develop FoodEducate, but licensed it from founder Hemi Weingarten).
  • Humana has begun offering the HumanaVitality rewards system to a group of Medicare Advantage members. Let’s hope that seniors will take more kindly to this program than to HumanaVille, Humana’s failed attempt at creating an online senior health education community.

Consumer Health Companies Need to Move Beyond Fanatics

If payer apps can’t motivate widespread weight loss, then maybe the consumer space can? Consumer companies are currently busy developing software and testing out motivational models on the fly.  This is not exactly the scientific method but it works for small agile environments…and is definitely something that large payers are less adept at.

There is a belief among many of the quantified-self set that just the act of presenting health data to the consumer affects behavior change.  I seriously doubt this, and believe that consumer health startups have played a miniscule role in affecting real behavior change.  So far, they have provided diet and exercise fanatics better tools to fuel their obsession.

In order to reach the ‘bottom of the pyramid’, must we then dole out dollars for weight loss? I recently spoke with Gregory Coleman, one of the founders of nExercise, which offers a gamified “rewards program” where users randomly accumulate points, similar to a lottery, which can be applied towards real world discounts.

(nExercise is also the driving force behind the recently formed FITco, or ‘Founders In Technology Combating Obesity’. FITco functions as a place for founders to form data sharing/interoperability partnerships, and aggregate marketing dollars).

Talking with Gregory, I found myself better understanding the challenges these consumer companies are up against as they seek to move beyond their core base.  In offering financial incentives, they must spark interest without destroying intrinsic motivation. Framing financial incentives in term of ‘rewards’ and ‘discounts’ helps, but the real goal is to wean users off of them.

Cash, Friends, and Coaching: A Pipe Dream?

Several academic studies have shown that a combination of financial incentives, social support, and coaching from a trusted ally, produced significant behavior change, at least in the short term.

I can imagine a day when I seamlessly upload exercise and diet related data into a CarePass-type platform, where:

  • my insurance carrier’s app notices that I have been working out, maintaining my BMI, and applies discounts to my premium.
  • my doctor’s app (motivated by value-based reimbursement), suggests that I keep my maximum heart rate below 160 BPM
  • I display achievement badges to my friends, and make my data available to health companies in order to receive discounts/free samples

Hmmm, what is that distant feeling of unease, the feeling like I am a pawn in someone else’s Grand Plan?  It might have something to do with the complete loss of privacy around my data.  However, if those premium discounts are steep enough, I can live with that.

Whether we get people sharing their health data or tempt them with financial incentives for weight loss, the systematic nature of the obesity problem remains a force to contend with. In the end it will be up to all of us to push back against the institutions that make us fat. Seeking out motivational consumer solutions is a low cost place to start.

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Sex Sells (or at Least Leads to Some Interesting Analytics)

One guarantee in the healthcare sector is that when it comes to personal health information (PHI), there is no lack of issues and pundits to discuss security and privacy of such information/data. If one does not jump up and down bleating on about the sanctity of PHI and the need to protect it at all costs, well then you may be labeled a heretic and burned at the proverbial stake.

Now don’t get us wrong. Here at Chilmark Research we firmly believe that your PHI is arguably the most personal information you have and you do have a right to know exactly how it is used. Whether or not you own it remains to be seen for we have seen, read and heard on more than one occasion – some healthcare providers believe that it is their data, not yours, and may only begrudgingly give you access to some circumscribed portion of your PHI that they have stashed in their vast HIT fortress, or worse, scattered in a number of chart folders.

But where we do differ with many on the sanctity of PHI is that the collective use of our de-identified PHI on a community, regional, state or even national level can give us some amazing insights into what is working and what is not in this convoluted thing we call a healthcare system in the US. Using PHI for such purposes needs to be strongly supported. Unfortunately, we do a terrible job as a country in educating the populace on the collective value of their data to understand health trends, treatments and ultimately ascertain accurate comparative effectiveness. This leaves the door wide open for others to use the old FUD (fear uncertainty and doubt) factor to keep patients from actively sharing their de-identified PHI.

One of the more popular and edgy online dating sites, OK Cupid, has done some great things with the data they collect on their users. They take the vast amounts of data they collect and do some pretty fantastic and fun (fun is good, fun is engaging) analysis to understand their users and what makes them tick. For some reason, the healthcare industry just doesn’t do fun things with the data – always so morbid!

Imagine if we could collect similar data on health, or heck, even better, imagine taking some of OK Cupid’s findings on body image and sex drive, (see chart 7 & 8) and using that to educate the public on why it may be in their best interest to keep their weight in check. Sure doesn’t seem like the threat of diabetes, heart failure, etc. is doing the trick to lower obesity rates, maybe hitting them below the belt will work.

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300 Million Asthmatics and the Future of Respiratory Monitoring

A few years ago my daughter began developing asthma-like symptoms brought on by reactions to pollen, cat dander, and other triggers.  I can still remember the panic I felt in my chest the first time she ran to me wheezing and crying that she couldn’t breathe.  Thankfully, her wheezing episodes are mild, have decreased over time, and she never received the ‘Asthma’ diagnosis.

Serious health events such as a severe asthma attack produce such a strong, albeit negative demand for health care that the patient often winds up in the ER.  In this respect, asthma is unlike other chronic conditions with more deferred consequences (e.g. ‘diabesity’).

Clay Christensen wrote about this phenomenon in his book, “The Innovator’s Prescription”. Despite the significant behavioral change required (carrying inhalers, taking medication, tracking symptoms, following Asthma Action Plans), asthmatics and their caregivers have good reason to be engaged and compliant with treatment – immediate consequences (relief) to severe attack drive behavioral change (see figure).

A Growing Problem [a Growing Market]

In the US, the CDC reports that 1 in 12 people have asthma. There has also been an unexplained increase in rates among African American children – an almost 50% increase in the past decade.

[Note: Why are asthma rates soaring? Possible causes are not fully understood within the scientific community.  The ‘hygiene hypothesis’ blames ultra-clean western societies that suppress the natural development of the immune system. Other research refutes the hygiene hypothesis and points to western lifestyles/obesity as culprits. There have also been more Asthma diagnoses due to improvement in diagnostic methods over the last few decades.  Further reading on possible causes can be found at Scientific American.]

Given that asthma is a severe, chronic disease affecting a large percentage of the population, it is easy to make the case for investment in asthma-related products.  The American Academy of Allergy Asthma and Immunology (AAAAI) estimates 300 million people worldwide are currently affected – almost 5% of the population, with incidence rates on the rise.

Segmenting the US asthma market by age provides a model to understand key engagement models:

  • Asthma Moms are continually engaged in their child’s care.  They oftentimes take information, tips, and questions to the blogosphere.
  •  Adolescents manage their condition with Mom’s guidance, though they are not as vigilant in adhering to treatment plans.
  • Adult Asthmatics no longer have Mom looking over their shoulder, but are nonetheless motivated to keep symptoms at bay.

Devices to Monitor & Prevent Asthma Attacks

When my daughter was having frequent wheezing episodes, I would have found piece of mind in a technology that could detect and predict when she was going to have an attack… or at least warn of nearby environmental triggers.

Taking a quick look at the Apple App Store, there are almost 100 asthma-related Apps available.  These range from free educational Apps to diary-style Apps that require data entry to track peak flow and symptoms. Do Asthma Moms, especially those whose children have low-severity asthma, really have the time and motivation to write asthma diaries? Not to mention adolescents and adult asthmatics?

One company, iSonea, is building technologies to avoid this tedious (and possibly erroneous) data entry.  iSonea is currently making a big bet that consumer and provider appetite for asthma monitoring technologies will grow in the coming years.

iSonea

iSonea is a recently restructured and re-branded company that has been developing proprietary acoustic respiratory monitoring (ARM) devices for years. These devices are equipped with sensors and software that detect acoustic markers such as wheezes, rhonchi and cough.

Note: iSonea was formerly KarmelSonix, a medical device company consisting of a joint partnership between Israel and Australia.

I had the opportunity to speak with the new CEO of iSonea, Michael Thomas, who sees iSonea transitioning from a device-centric company to one that is software-based (guarding the castle with already-acquired IP).  In a future filled with Smartphones,   iSonea will try to reach those 300 million asthma patients through mobile Apps rather than through proprietary, expensive devices.

Imaging breathing into your Smartphone, which will analyze and quantify your wheezing in the audio.   Or, imagine your Smartphone setting off an alarm as it detects nearby environmental triggers, crowd-sourced in almost real time by nearby asthmatics.

iSonea is looking at the following revenue streams:

  • App downloads and upgrades. The first version of their AsthmaSense™ App will be released in 2012 with a subscription service.
  • Data. Anonymized patient data will be up for sale (iSonea is partnering with Qualcomm Life to get data out of devices and into the cloud). If a statistically significant number of asthmatics use the iSonea App, this data becomes valuable to a host of buyers.
  • Ads. Products and services could be marketed to the user based on usage patterns.  For example, coupons for therapy drugs could be displayed, etc. (This remains a sensitive area – iSonea needs to find the right amount and types of ads, if any)

Emerging Technologies to Engage Consumers

Another topic I discussed with Mr. Thomas and his VP of Marketing, Michael Cheney,  was the issue of how to make the Smartphone App ‘sticky’, or compelling to use.  All of us mobile-addicted folks know the feeling -  when out of the blue your brain sends you a signal to take your phone out of your pocket and start slinging angry birds.

Will the healthcare space tolerate consumer engagement strategies that have shown success elsewhere?   For example, can we social-ify and game-ify healthcare apps and expect higher user engagement?  I remain hopeful that, treading carefully, healthcare apps that use social media and gamification strategies can indeed achieve higher engagement rates, especially among  digital natives (youths).   App developers are already starting to wade into these waters. One interesting example is the DiaPETic App, where users are rewarded via their pet avatar for sticking to a glucose testing plan, much like the popular children’s online game, webkinz.

Who knows, maybe iSonea’s App will indeed spread virally as users encourage their friends to start “playing along” with them as they manage their symptoms and avoid attacks. Engaging adolescents in this manner would especially be appealing to Asthma Moms, who could do with a little less stress in their lives. But iSonea will need to take their existing mHealth App a bit farther than they have to date to enable such viral attraction among adolescents.

Anyone Else Out There?

There is a surprising dearth of competitors to iSonea, which means that either iSonea is particularly early and/or the space is an especially risky one – with no worn paths to tread.

One company that may morph into a company more like iSonea is Asthmapolis.

Asthmapolis is based out of Madison, Wisconsin and founded by Dr David Van Sickle, formerly of the CDC. They manufacture GPS-enabled devices that attach to inhalers, tracking when and where an asthma puff was needed. Recently, Asthmapolis announced a partnership with Dignity Health (formerly Catholic Healthcare West) where doctors will monitor patients’ inhaler use via a mobile App.

Like iSonea,  Asthmapolis will make asthma data available to patients and clinicians, and sell it to public health agencies and scientists.  Asthmapolis is also developing mobile Apps to receive and display this data, but is not currently (or publicly mentioning) any intent to move beyond GPS-inhalers and towards Smartphone-based asthma monitoring, which is a little surprising in this day and age when just about anyone that is considering a mobile App, typically ahas a smartphone strategy associated with it.

Market Analysis

How will iSonea (and Asthmapolis) defend their strategic positions if the market revs up and new competitors race to the honeypot? Will iSonea’s IP be strong enough? Will they have enough cash to hire good patent infringement lawyers?

Or, maybe this market will really be about the data and network effects.  The service to garner the most momentum early on will become exponentially more valuable until the market tips.  I wonder if Dr Van Sickle’s relationships with the CDC and medical researchers are strong enough so he has first dibs on selling data for population health management.

It will also be interesting to see when and where pharma will step in here (GlaxoSmithKline comes to mind).  Better daily monitoring leads to improved medication compliance, which will help fill pharma coffers.  I’m sure iSonea/Asthmapolis are already entertaining numerous solicitations for partnerships from Big Pharma.

Towards the Utopia of ACOs

The improved monitoring and prediction of asthma attacks definitely has a role to play in a post fee-for-service, ACO/PCMH world.  No doubt these technologies will help shift the patient’s perceived role from passive recipient of care to a more empowered consumer of health, resulting in less ER visits, less readmissions, and ultimately lowered healthcare costs. The social/crowd sourcing component may prove to be especially valuable – with asthma sufferers steering clear of various dangerous locales where several “attacks” occurred. There is, of course the whole privacy debate and clearly, patients should be given an option as to whether or not they wish to have their data shared. More than likely, most will choose to share their anonymized data, but that should be their choice and not that of the vendor of such solutions.

Of course there is no guarantee that consumers will adopt these technologies en masse. Will this be a technology that consumers ‘pull’ rather than it being pushed on them by providers? Will they adopt without a physician’s order or feedback and without FDA approval? One remaining issue is how to monitor children who can’t be trusted to carry a smartphone – either they need to wear some form of (expensive) proprietary device or then again mobile platforms such as the Apple iTouch with a simple data plan may fill this gap.

On a personal level, I would nevertheless like to see asthma monitoring stand out as a poster child for remote monitoring success.  If we can figure out a way to engage Asthma Moms, adolescents (with Social/Gamification strategies), and adult sufferers, then moving on to other chronic conditions on Dr. Christenson’s 2×2 matrix will begin to look more achievable.

Just this morning my daughter told me that she had trouble breathing last night. I look forward to the day when instead of me learning of her symptoms after-the-fact, a phone can wake me up in the middle of the night to warn me to check on her immediately.

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Forecast and Ramifications of Payers in the HIE Market: Part Two

(Note: This is the second of a two-part post.)

Keeping it Local

This is most representative of the status quo and the most realistic path forward for the vast majority of payers who typically operate at the local level. In this scenario, one or more health plans in a regional market partner with other community stakeholders to co-fund and sustain a regional HIE. These stakeholders typically include large corporations with a large local employee base and/or provider organizations. Successful examples of such multi-stakeholder HIEs include the Louisville HIE (Humana, Anthem, Ford, Yum! and Kroger), and the Rochester RHIO, where payers (Aetna, BCBS, MVP) and hospitals share a 2/1 split of all operating expenses on a transaction model.

The benefit to payers in participating and most often funding the majority of such an HIE is three-fold. First, partnering with other organizations in the region contributes to a greater “fabric of trust” between the HIE and physicians within the region leading to greater physician participation. Secondly, by partnering with others, the payer is able to share HIE operating costs with other stakeholders. Third, physicians actively exchanging patient data can prevent some hospital readmissions and decrease duplicative lab and imaging tests, thereby lowering a payer’s total coverage cost in the region.

Conclusion: As HIE’s unfold at the community scale, local and regional stakeholders will share the operating costs and governance. As far as payer support for HIE’s goes, Chilmark predicts continued growth of these types of HIEs, particularly in less urban communities. We also predict that there will be significant growth in enterprise HIEs that are partially funded by payers, ultimately in support of a payer-provider partnership to establish an ACO. (Again, look to the recently announced NaviNet-Lumeris deal wherein three regional payers also played a role. For those payers, it’s all about making the provider transition to ACO/PCMH models as frictionless as possible.)

Real Challenges Remain

Despite a seemingly straightforward path for payers to get involved with HIE’s, there remain a number of challenges. These are two-fold in nature: Regulatory and Marketplace. On the regulatory front, the list of challenges is long and familiar: ICD-10 (while it seems like there will be another delay, much to the chagrin of the AMA this isn’t just going to go away) and HIPAA 5010, health insurance exchanges and other health reform mandates. (On the plus side, health information exchange-related spending counts favorably towards new medical loss ratio (MLR) rules).

However, the marketplace is where the true challenges lie, as there is hardly a guarantee that payers and provider groups will play nice with each other. Nowhere is this more evident than in the Western PA market, where a sort of fisticuffs have been going on between Highmark BCBS and UPMC.  Without going into the sordid details, Highmark (who just bought Pittsburgh’s second largest hospital network, West Penn Allegheny) and UPMC are now building competing HIEs in the same region because of a longstanding spat over contract negotiations. To hospitals who are now faced with participating in two separate HIE’s, this does not make much sense.

For the payers however, it does make sense when cast against the backdrop of rising competition. (Chilmark noted this challenge after attending the AHIP confab last summer.) Insurers are fighting with each other to keep their networks competitive. Providers are fighting with each other to secure preferred referral status, i.e. patient volume. Introducing an HIE in the middle of this environment has wide reaching implications for where patients are sent as well as who accrues and shares the savings. Throw in the variable of different reimbursement rates for commercial, Medicare and Medicare Advantage patients and you can see why partnering up to set up an information network is more than simply writing a check.

2012 and Beyond

So what does this all mean for a huge guest who’s seemingly unwanted at the party? Ultimately, payers’ involvement boils down into a few categories:

  • In the light of the tighter margins imposed by health reform, insurers who can afford it will diversify their business. The national health plans will be looking to acquire their own platform ala Aetna and UHG, with the additional hopes of squeezing cost savings out provider users and building a more favorable MLR. The main considerations in predicting this shift include vendor consolidation and the readiness of existing provider networks to collaborate.
  • Regional Insurers, such as the Blues and other statewide or multistate networks, have the wherewithal to setup and license their own platform for exchange either through payer-payer partnerships or on their own. The recent NaviNet deal seems to be more of an ACO play, but indicative of the business strategy of this class of payers who are willing and able to be flexible in how they approach their role as stakeholder in information networks.
  • Local Insurers who have fewer resources and who operate directly in the tides of market competition will opt for a ‘safer,’ multi-stakeholder approach in their communities. Partnerships will be heavily influenced by network dynamics, reimbursement channels and existing arrangements, such as burgeoning accountable care communities.

So, as rosy as information exchange seems on paper, it is permanently changing the way that provider and payer groups do business. From where Chilmark stands as an observer of the market’s evolution, it is all too clear that payers and providers ultimately have little choice but to work together. Payment reform and millions in IT incentives have already begun to influence the way that the delivery and payment markets work; the future of accountable care, proactive population health management and ‘smart’ health care delivery all depend on willing and trusting partnerships.

Unfortunately, as is too often the case, patients and other stakeholders get left out of the decision calculus. Pittsburgh residents will hardly benefit from the competitive business posturing there. We hope the folks deploying HIE’s over the coming years will put as much of an emphasis on leadership and governance as they do on technology and of course, the health of their business.

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Whose Data is it Anyway?

Chilmark Research tends to shy away from the thorny, nearly intractable issues of privacy and security of Personal Health Information (PHI) (we’ll leave that to the lawyers and policy wonks to figure out). However one thing is very clear: As we continue to conduct more and more of our daily activities, both business and personal, via some form of digital device all those little messages, those bits and bytes of data we create are being collected by someone, somewhere to create a more accurate profile of us. In my own case, how else would my favorite site for weather (weatherunderground) know I’m an outdoor enthusiast and have a banner ad for backcountry?

Despite our reluctance to tread into this domain, it is one of extreme importance.  The healthcare industry is undergoing a digital transformation at roughly the same time as consumers increasingly use an ever wider set of digital tools from social media (twitter, facebook, etc.) to text messaging services (txt4baby) to various health & wellness apps on smartphones and even biometric sensors (Nike+, fitbit, Withings, etc.). We’re not sure where all this will lead but at the very least, the public needs to gain a better understanding of how their digital bits and bytes are being used and maybe begin to think twice as to how and where and with whom they share their PHI.

Today, we found one such educational tool, an animated video by Michael Rigley which is quite powerful using MMS as an example.

If this is what the telecoms can now do with a simple MMS, just imagine what they might do with some of that rich health-info you may be communicating.

As an aside, Dr. Searls is doing some interesting work at Harvard Law’s Berkman Center on the concept of VRM, (Vendor Relationship Management). Much of the principles he outlines could easily be transposed to the healthcare sector and the management of one’s PHI.

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