Musings on PHRs & Consumer Engagement

The recent post on Google Health going into the deep freeze has solicited a number of emails, including some from the press. In one of those emails a reporter had spoken to several industry thought leaders to garner their opinions which follow:

Consumers will not sign on to most Personal Health Platforms (PHPs) or services due to the issue of trust.
- Leading researcher and developer of an open PHP.

Provider sponsored PHPs and patient portals will dominate the market for they offer services that patients/consumers want such as appointment scheduling, prescription refill requests, etc.
- Leading CIO who is also actively involved in HIT policy development.

The only people who care about a PHP, PHR, whatever you wish to call it are those who are struggling with a life-changing illness.
- Co-founder of leading site for those with serious illness to gather and share experiences.

Chilmark’s thesis is an amalgamation of the last two statements (we’ll get to the first one shortly).

By and large, people do not care about their healthcare until they have to, either for themselves or a loved one. Even then, if they are very sick, it may be far more than they are capable of to set-up and maintain a PHP. These systems are still far too hard to create and manage, let alone trying to get doctors and hospitals to feed complete records and updates into them in some automated fashion. There may be an opportunity in providing a system for baby boomers to help manage their aging parents health issues from afar. We have yet to find a PHP, PHR, whatever you wish to call it that ideally fits this market need and may be an opportunity for an enterprising entrepreneur.

As we have stated many times before, consumers are not terribly interested in a digital file cabinet for their records. What they are interested in is what that data can do for them, particularly on the transaction side. In the “what’s in it for me” category, consumers seek convenience in all aspects of their lives. If they are presented with a system that not only grants them access to their records, but helps them schedule appts, directly communicate with their care team via email, do Rx refill requests, etc. then you’ll see some adoption. THis supports the statement of the healthcare CIO above.
But even then it may not see strong adoption if clinicians are not strong advocates of its use. In deference to the first comment above from the researcher, trust does matter and patients/consumers do trust their doctors. If the doctor encourages use, adoption will follow.
Unfortunately, sites like Google Health, HealthVault and Dossia  as well as a slew of other independent PHR companies are one step removed from these types of transactions and their use is not actively encouraged by clinicians, leading to anemic adoption rates. And even within healthcare organizations, there is often not strong support among clinicians for patients to use the organization’s sponsored, tethered PHR.
Will the HITECH Act, meaningful use requirements, the move to bundled payments based on quality, the establishment of Accountable Care Organizations, the creation of individualized care plans, the desire to transition to true patient-centered care, will any of these initiatives change the market dynamics for PHPs, PHRs, etc.? One could hypothesize yes, of course. But we’ll go back to the preceding paragraph: Until physicians/clinicians actively promote the use of such systems by their patients and the systems themselves become far easier to use and address specific consumer/patient pain points, the growth prospects for this niche market will remain flat-lined.
Posted in ACO, Consumer Engagement, consumer health, Dossia, Google Health, HealthVault Tagged with: ,
23 comments on “Musings on PHRs & Consumer Engagement
  1. Carlos Leyva says:

    Agreed. The whole meme about the “empowered patient” is over hyped. Sure there is a benefit but who has the time to keep all of this healthcare data updated? Those solutions that are the easiest to use and tied to something that consumers already use are likely to win.

    I can tell you from experience as a diabetic and someone who has been living on the web for over a decade that, I don’t have the bandwidth to do it, despite the fact that I know I need to do a better job of tracking my disease.

    • John says:

      I’m with you Carlos. Since I studied this market, I do have a couple of PHR accounts but frankly find it difficult to maintain. Looking for one with simple publish/subscribe capabilities that automatically loads up any visit I have, any lab result, meds list and even where my deductible currently stands. And while we’re at it, sure, let’s load up my Garmin cycling data as well. We’re not there yet.

  2. Clay says:

    One observation is the assumption of extremes…either it’s a personally-owned system that doesn’t connect to anything valuable or it’s a tethered system that mainly acts to make administrative functions (e.g., scheduling, getting my CARE record) easier. There’s an opportunity to create a hybrid approach that is person-owned but can support sponsored services. Provider’s aren’t financially motivated to drive this new model…it will need to come from employers and other payers, but provider’s buy-in is critical (at least in parts of it).

    Another observation is that this is all about care, not about health. I’m an optimist and believe people both have the capacity to engage and will have increased financial incentive to engage over time. Technology is an enabler, but as John points out, could also be a barrier (e.g., if my data doesn’t go where I go and see who I see).

    • John says:

      Agree Clay the only problem though is that most do not trust the payer nor their employer and payers have been dragging their feet on supporting portability.

  3. TC says:

    PHPs are a critical solution to the rising cost of healthcare because, if provider and payer databases are integrated, the data can be used to prevent overutilization and medication interactions, monitor and track patient outcomes, detect fraud and abuse, predict disease outbreaks, and strengthen follow-up care.

    It is unfortunate that, as cited in the article and other comments above, people don’t care, even those who have chronic conditions (which are bound to get worse if unchecked and spiral into other comorbidities, costing a fortune). The “people don’t care” and the “it’s not my health issue” arguments are ludicrous, since, as we all have seen from the infamous NHE stats, it’s a $2.6 T price tag (and rising) that ALL taxpayers are shouldering.

    One way to force people to use PHPs is during enrollment in a medical insurance plan (whether government or employee-sponsored). Although each PHP may not be interoperable or standardized, at least the health data is housed in one secure area, and the patient could grant access to providers and other caregivers (such as a health proxy).

    And one correction: providers are motivated to use HIT tools to increase cost-effectiveness and improve quality of service delivery. I want systems that show how my patients are doing, and I want to know my performance metrics based on the health outcomes stats of my patients. I want to make sure that only the great providers are practicing and that we figure out ways to make services more affordable.

    It is only when we care that we all do our part to find the value in our health system.

    • John says:

      TC,
      Payers & employers have been offering PHPs/PHRs for years but there is the issue of trust and very few actively these offerings as they do not trust the sponsor. Another problem with these offerings is that they are based on claims & PBM data. PBM data is clean, claims data comes with a whole host of issues.

      As to providers motivated to use HIT tools, the market says otherwise. Adoption of EMR/EHR technology has been nearly as anemic as consumer adoption of PHRs. The HITECH Act and the subsequent incentives to adopt an EHR has certainly picked up the pace of adoption, but it is not like physicians are running out the door to grab the latest and greatest EHR offering being sold on the street corner or your local Sam’s Club. HITECH Act incentives will help drive adoption but the move to bundled payments with reimbursement based on quality measures will likely drive adoption even more so.

  4. What patients really want is the ability to see the physician and register without all the repetitive data entry and entry of medical history, allergies, etc.

    • John says:

      Agree Gary, this is what the average patient/consumer wants. There is a subset that is asking for more, the baby boomers I referenced and those with a life changing illness. Unfortunately for them, the tools today are still not as easy to set-up and use to drive broad adoption.

    • Shawn Bolan says:

      Couldn’t agree more with you. The prevailing interest for any patient, whether chronically sick or not, is to expedite getting into to see the doctor with a minimum of overhead. PHP/PHRs serve a segment of concerned patients but will not be readily adopted by all.

  5. Sean Nolan says:

    John, as you might imagine I think you’ve flipped a bit too early on the potential for these tools to make a big impact.

    Rather than try to have that conversation in a comment thread, I’ll just lay down $50 that says you’ll be singing a different tune on May 16, 2012.

    Is it a bet? ;)

    —S

    • John says:

      Sean, $50 is too easy a bet, or at least not as fun. How about a Red Sox jersey?
      As to whether or not I have flipped too early, it really depends on how one defines impact. I do see a lot of potential, in fact I believe it is absolutely crucial for consumers/patients to become more engaged if we truly want to bend the cost curve – was one of the prime reasons our first report was on the PHR market. But in the three years hence, just have not seen the movement, the engagement, the evolution of the tools to a point that would drive strong adoption. Not too hopeful for a year from now either, thus I’ll take your bet and raise you one Red Sox jersey.

  6. Stav Lee says:

    Do you think there is room in Google’s cryogenic chamber for a useless web blogger?

  7. Tom M. Gomez says:

    Sean, John – now that the bet is down on the table – we out at the edge want in on the wager.

    As Sean knows well – I have always been a fan of the “potential” for HealthVault – but just like John – the consumer in me thinks it has been a bit too long and we want to see more than what has been delivered to date..

    So – I will take John’s bet, attach a zero cost collar on it and trade the derivative in the secondary markets :-)

    Too often “trust” is thrown around as the excuse for the dismal adoption in PHRs. But trust comes with providing the consumer what they really want – in a manner they want to consume. In other words – a good product begets trust.

    Today’s PHR market reminds me of the old Wendy’s commercial – where’s the beef? (still looking for that Wendy’s that is “coming to a location near you”)

    http://youtu.be/aISkVvi5iI8

    Cheers!

  8. > By and large, people do not care about their healthcare
    > until they have to, either for themselves or a loved one

    Is this a surprise?? I don’t get why you (a famously & truly smart person) keep banging on this point.

    I’m supposedly famous for being an engaged patient, but as I always say, that didn’t happen until I had my “NOW I care” moment. Today I’m a bit more engaged than I was, but not much. What I advocate for is tools to ENABLE patient engagement when they WANT it.

    And that’s hella different from Davey’s Daily Diary, which would indeed be not very well adopted.

    • John says:

      Dave, that was a comment from another, see top of page, that was simply re-iterated. As another commenter stated, the e-Patient push has become a little over-hyped at this point.

  9. Adam says:

    John – have you heard of VisionTree? They provide value to the clinician and patient through a neutral branded PHR but they also collect long term outcomes that integrates with the EMR. The feature set you mentioned is also available to the patient.

    Would love to get your thoughts on companies that are doing a mutually beneficial model vs. A self maintained PHR.

    • John says:

      Yes Adam, I have heard of VisionTree and do recall that they were in discussions with one of the PHR vendors. I did not know that they now have a PHR product on the market and will need to look into it. Thanks for the head’s up.

  10. Stewart says:

    Hi there, I need and want better PHR tools because I am a mother of two small children and live far from my elderly parents. I cannot advocate and coordinate care for them very easily in the fractured connection among primary care and specialists including eye doctors, pharmacists and dentists.

    I agree that PHRs and other tools can’t move forward until they make it easier for the consumer. I wish all lab tests, appointments and doctor comments could be co-located there in real time. I wish that follow up visits and well-child physicals could be posted so I could coordinate schedules and vaccines. Medicines and side-effects would be nice too. If the PHR could send me a text msg reminder that my little girl needs her vaccines updated soon that would be a first step in the right direction! If I could also know that the prescription is about to run out that would be great!

    Could software designers and health care professionals ask the care coordinators of families with complex medical needs what they need to track all this? Start with the greatest need and the whole “health” movement can follow. I don’t understand why PHRs are focusing on the consumers who need coordination of health care the LEAST. Why not start in the other direction where there is very strong motivation for use? Truly, no one REALLY wants to connect to doctors and others when they are healthy. This group would be in the market for odometers, heart rate monitors and stand alone tools like that. I hope the products improve and I hope the focus is on coordination of the services the medical industry actually provides.

  11. Charley says:

    John, like you I observe the healthcare market from a cross-industry perspective – yours in manufacturing and mine in financial industry of the 80s. PHR and HIE evolution seems to be tracking well with the early days of electronic banking (e.g. ATM, debit cards, home banking).

    In spite of much speculation, consumer adoption only gained traction after industry stakeholders and regulators established a common framework where function, cost, and convenience reached the tipping point for a meaningful segment of consumers.

    As anxious as we are for PHR and HIE sustainability, history suggests much work on healthcare stakeholder alignment is required to make this a reality.

    P.S. In addition to your Garmin interface, I’d add a download from runkeeper.com. Also, I’ll take your side of the bet if I could get a Texas Rangers jersey (Hamilton) :-)

    • John says:

      Looks like we are in agreement Charley wherein there will need to be much better alignment among stakeholders to make the PHRs & HIEs a significant reality that gores beyond what we have today. ACO formation may provide the impetus for such alignment, but we’ll have to wait and see what comes out of CMS in the final rules and even then it is likely to be slow slog until we get to that tipping point.

      As to that bet, if I start taking on bets with all comers, I’m going to have such huge closet full of Red Sox jerseys, I’ll likely run out of players to choose from.

  12. Dave Chase says:

    [Full disclosure: I've got a dog in this fight.] I agree with most of what’s been said here when it comes to the mainstream. My advice is to look to the edges for a view into the future. This will give one a better view of the future than looking at the major entrenched players. I’ve been fortunate to have played a role in a couple major tech industry shifts. First when I founded Microsoft’s health effort when MS was considered a non-factor beyond the desktop (this was ’93) and we had success shifting much of the market to a MS server platform over the balance of the 90′s. Later, the online ad industry was similarly dismissed by Madison Avenue.

    The organizations that drove the shifts in both cases weren’t the obvious players. Those disruptive companies ultimately motived the rest of the market to move as they had compelling results. The parallel today is to look at all the talk of Patient-centered Medical Homes and Accountable Care Organizations. On the edges, there’s organizations already doing much of what is considered as PCMH and ACOs. On the latter, one only has to look at Kaiser and the VA to see a level of patient involvement with integrated PHRs, etc. that is far beyond what most health systems exist today. When it comes to PCMH, there is an explosion of what I call “do it yourself health reformers” who are living the vision of PCMH. Organizations such a Qliance in Seattle, MedLion in Northern California, Access Healthcare in North Carolina and so on. Some are doing more technically sophisticated things than others but they view accessibility to their patients and their engagement in their care as a central organizing principle rather than something that is new. Their results aren’t broadly known but are stunningly effective (both cost and health outcomes).

    The other thing to bear in mind is the technology adoption cycle has been flipped on its head. It used to be that the first place for new technology to get adopted was at the largest organizations (DoD, Fortune 500 companies) and then it would eventually trickle down to small business or consumers. Now, it’s the exact opposite. Think about things like peer to peer networking, instant messaging, social networking, smartphones, etc. These are starting at the consumer or small business level and then moving upstream to the large organizations. The challenge for many tech companies is they have an economic model that doesn’t allow them to serve the smallest organizations (i.e., the cost of sale is too high to justify what these customers can afford). For example, just look at how Salesforce.com is spanking Microsoft and Oracle in CRM due to a model that supported the small customer and then they have eaten away at them from below (ironically what Microsoft once did to IBM, Sun, etc.).

    I’m incredibly impressed by the innovation in new care and payment models that are all over the place. The problem is they are so diffuse that most people aren’t aware of them and of course, they need to scale up.

4 Pings/Trackbacks for "Musings on PHRs & Consumer Engagement"
  1. [...] Article John Moore, Chilmark Research, 16 May 2011 [...]

  2. [...] of the biggest sources of hype in health IT. John Moore recently wrote about the frozen state and limited reach of PHR, and it’s hard not to agree with him. It seems that most organizations who have achieved success [...]

  3. [...] Musings on PHR and Consumer Engagement Posted in Collaborative Care Top [...]

  4. [...] — all the indicators are pointing the right way. Some of you may have noticed that I just bet John Moore a Red Sox jersey (Schilling for me, Wake for him) that this time next year he will have changed his tune about the [...]

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