By now everyone has seen the announcement last Friday that Google Health is being formally retired. Thanks to the several years I worked on Google Health, my phone was ringing off the hook Friday afternoon and emails were pouring in all weekend long.

Let me first start by saying that I am not going to comment on any specific company details. I think the broader question to ask anybody that has worked in health IT and consumer tech for the past 15 years is what have you learned from this experience. Or how about, is there a market for PHRs in the future?  Given that I started looking at PHRs back in 2005 while I was working for David Brailer at the Office of the National Coordinator (ONC), here is what I would say I have learned:

1. Healthcare is paternalistic – consumers are blind to costs and data.
Let’s face it. Our current healthcare system is set up to be extremely paternalistic.  Health plans, hospitals, and physician practices steward patient data on the patient’s behalf.  Patients don’t know the costs of a simple outpatient procedure or inpatient stay.  Because health care is not a true market-based commodity in this country, patients end up being lousy healthcare consumers.  Unlike the banking, airline, and retail industries, this makes it much harder to convince a broad array of consumers to engage in a service that helps them organize, manage, and share their medical records online.  The value proposition becomes even harder when consumers are not rewarded with industry aligned incentives for taking the time to manage their personal health data (e.g., discount on health insurance premiums, lower co-pays at doctor office visits, or something beyond a measly $50.00 benefit credit for signing up for a PHR at their place of employment).

 

I liken PHRs to credit check services. You go to Equifax or Experian when you want to generate a credit report because you are making a large purchase.  But, in general, you almost never pay attention to your credit score until you need to know it or have an issue.  Health care is very similar, you only care about your medical data when you get sick, show up in the ER, or start taking care of someone else who is sick. Otherwise, out of sight, means out of mind.

2. PHRs are boring, too generic, and are not social enough.
In their current form, PHRs strive to do too much and as a result do not have enough functionality to appeal to a broad array of users. PHRs are generally designed to store structured medical data that comes from the established medical industry. But my mom does not understand what CCR or CCD means.  PHRs are boring to the outside world and too insular within the established medical community. They generally do not take into account the broader definition of health such as: quality of sleep, food intake, stress, emotional wellness, frequency of exercise, intimacy and support, caretaking tasks, etc. If a PHR successfully imports data in from a medical provider, the data generally does not make sense to the consumer who is using the service, or may not even be current (e.g. prescription history from CVS over time).  Even if the data is normalized or presented with sophisticated visualization tools, the data is still somewhat hard to break down for a layperson (e.g., what exactly is a “bad lab test result”).

PHRs that focus on one or two tasks or certain discrete types of data will find a market to serve in the future.  An example of this type of specialized service is a  “Pregnancy PHR” which would focus exclusively on storing and sharing fetal ultrasounds throughout the duration of a pregnancy.  Imagine the social media you could build into this PHR. Friends and family members would love to be able share ultrasound images in a networked group and comment on who the baby most looks like. You could even post bets on baby names during the entire prenatal experience. Growth charts and immunization records for kids is also another area where PHRs could be really successful (check out the new startup Motherknows.com). Even OB/GYN care and fertility treatments have a ready-made market for specialized PHRs given the amount of women who are highly motivated to store and share their reproductive medical information. The market for specialized PHRs will have even a better chance for success due the explosion of “health apps.” Mobile platforms will make it much easier for niche PHRs to get distributed and adopted.

3. People Want Convenience Features Not Medical Archiving
At the end of the day, people want their lives to be made easier and to save time on everyday healthcare tasks. They are not as interested in archiving medical data at large. In my 15 years looking at PHR survey data and leading and hosting various consumer and provider focus groups, I kept hearing four main themes:

1. People want to securely email their doctor to ask a quick question or discuss a lab result;

2. People want to ask for and get Rx refills online;

3. People want to book medical appointments online; and

4. People want to get information that is personalized to their health needs.

While some PHRs have a few of these convenience features (e.g., Kaiser Permanente’s My Health Manager), most do not. Services like Zocdoc are tackling online medical appointments and scheduling across the nation. Teladoc is trying to offer secure messaging with licensed doctors via email, phone and video. Most retail pharmacy chains offer Rx refills online via their own patient portals.  All of these services are trying to solve these problems outside of the PHR environment.

4. Data Authentication is a Bitch.
In the world of healthcare, the burden of authenticating a patent’s identity, across multiple systems, falls on the manager of those systems via HIPPA. In lay terms, this means that in order to release any of your medical data (data that is about you), a HIPAA covered entity or business associate has to confirm that you are who you say you are. This is not so much a regulatory barrier as it is a user-design and user work-flow issue.  In an untethered PHR model, linking your PHR to an integrated service requires that you get your identity authenticated by the service you are linking to. So you have to create an identity on the service side first, (e.g., Quest Diagnostics). You also have to remember your username and password for the service while you are going through the one time linking process. Most people do not remember their username and password or do not have one yet and get frustrated and abort linking all together. If you don’t already have an online account with the service, you are forced to create yet another online credential. Then you may have to wait for that provider to confirm your identity by sending you an email confirmation, activating a PIN, or possibly even mailing you something to your home address. Each provider may have a different form of identity authentication which can slow up the whole linking process. Until this piece gets worked out, PHRs (especially untethered ones) will have a hard time gaining speed.

5. To tether or not to tether – that is the question.
Let’s first pay homage to several early PHR trailblazers who were in the space over a decade ago and provided early data points on the tethered vs. untethered model.

  • Ed Fotsch at Medem created a PHR within a provider portal called iHealth that was co-founded by the AMA and several other national medical speciality societies. Medem was sold to Medfusion in 2009 but was best known for its doctor-hosted PHR model.
  • Wendy Angst at CapMed launched a commercial PHR in 1990. The company positioned itself as an untethered PHR in 2003 using a USB key then quickly learned that the hospital tethered model was more viable with regards to diffusion and a sustainable business model. CapMed was sold to BioImaging in 2003 and then sold again to Metavante Technologies in 2009.
  • Cynthia Solomon started one of the first consumer-based PHRs called FollowMe back in 2000 and has since garnered moderate success on the untethered side by serving special populations. She spun off  Mivia.com, a PHR for migrant and seasonal farm workers in 2004, and most recently HealthShack.info, a PHR for youth and those aging out of foster care.

All of these early PHR innovators worked very hard to explore where PHRs would have the most uptake and impact. Recent survey data (Markle Foundation, Jan 2011) suggests that PHR adoption is trending upward, from 3% in 2008 to 10% in 2011.  We can assume this uptick is on the tethered side (62% of respondents in the Markle survey say their PHR was offered by their doctor or hospital). Those surveyed by the The California Healthcare Foundation, April 2010 reported doctors as the most trusted source of PHR offerings (58%). While tethered PHRs have historically shown higher adoption numbers, they still don’t solve the problem of consumer mobility and data liquidity. The heaviest adoption seems to come from the large provider tethered offerings through organizations like Kaiser Permanente (they claim they have 33% adoption nationwide), Palo Alto Medical Foundation (PAMF), The Cleveland Clinic, Beth Israel Deaconess Medical Center, and MyHealtheVet at The Department of Veterans Affairs (VHA).  There have been dozens of other attempts at trying to deploy independent PHRs directly to consumers or through payors and self-insured employers, most notably are players like WebMD, Dossia and Revolution Health who closed down their PHR business in early 2010.

With the push towards Accountable Care Organizations (ACOs), medical homes, and the inclusion of EHR interfaces to PHRs as part of the meaningful use criteria, there is a place for PHR-type applications to evolve in the future for providers who are managing patient interactions between cycles of care.

While there is so much more I could say about what I have learned in the last 15 years in this space, I invite my colleagues in the industry to chime in as well. I applaud others who are continuing to do the hard work in this space, like my hardworking friends at Microsoft HealthVault and those in the government who are looking for ways to support data interoperability in name of the consumer.

Missy Krasner, is the former founding member, Google Health & Senior Advisor to David Brailer, National Coordinator for Health IT, Office of the National Coordinator.

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37 Responses for “The PHR School of Hard Knocks”

  1. Very well put. I can’t see 90 percent of people wanting to manage an untethered PHR any more than I can imagine them wanting to manage an untethered record of their auto repairs or home maintenance.

    The question of archiving medical data versus convenience also rings true. For most of us, the archived data is of no value. That is, for those of us who are healthy. I had an achilles tendon rupture ten years ago. Other than that – nada.

    But you appear to be a true entrepreneur: Ready for the next challenge!

  2. Great job of describing why usage of generic PHRs hasn’t taken off. I posted my analysis on my blog yesterday: http://www.healthcontentadvisors.com/blog/2011/6/28/google-health-post-mortem.html and focus on why a PHR-centered Google Health strategy didn’t make sense for Google even if the level of adoption had been higher. Of course, highsight is 20/20, but my comments have been consistent from the beginning.

    • I think that just might only be the beginning of the problem, not only are patients not willing to manage the data but there is also the issue of the integrity of the data. Lets face it we rely on information from various databases to make the journey complete. You have to integrate PBM’s, discharge data, and a plurality of other healthcare management databases such as national electronic information corporation, EMSI, …..the list goes on and on and this has to be compatible for ANSI EDI. So even if we made it mandatory as a use, how do we combine all datasets??????

    • Soeren says:

      I was a Google Health user and was always ditappoinsed by the lack of participation from my providers. I like this notion of sort of an electronic health records release to gather data very interesting idea.

  3. The PHR is an idea which failed, not due to Google. There was little demand for it.It would always have to be subsidized. Patients just do not want to use one, forget what has happened, and when ill or recovering have better things to worry about, such as their impending financial load from being ill. If EMR is successfully implemented it would be meaningless at any rate, because patients will have access to their data in the EMR. Next will be Microsoft’s Health Vault.
    Nice idea, superfluous however.

  4. J.D. Kleinke says:

    Any PHR-type application – or any platform like Google Health that supports multiple PHR-type applications – is only as useful as the data it can access, display and transport. Even the brand heft of Google was clearly not enough to get a critical mass of health care providers to open up their systems and processes to enable this data “liquidity.” And why should they? Data outflow means potential patient outflow, i.e., the loss of a customer to a competitor. Even worse from a provider’s point of view, accepting data inflow up the same pipe from PHR-type apps/platforms for a new patient means loss of revenue on all those tests, work-ups, marginal admissions, and other services that access to PHR would reveal.

    Health care providers, who hold the data of greatest value to patients, are – whether they admit it or not – exactly NOT interested in customer mobility, nor in avoiding redundant services. They are interested in customer retention and revenue maximization. Why would any provider or health plan for that matter, invest in collective IT systems like PHR platforms that make it easier to move your business, along with your data, to a competitor?

    The demise of Google Health is one more example of the perennial power of inertia in health care, and primacy of strategy and money over patient empowerment and quality of care.

  5. rbaer says:

    A really inspiring post. It is true that most health information is boring, often hard to interpret, and therefore insular. The following came to my mind:
    -link the PHR to social media. Certain (user defined) groups may share more relevant data such as genetic fingerprints of their HPV infection, and that, from a social perspective, could be really exciting (and of interest for reality TV, MTV should invest)
    -”quality of sleep, food intake, stress, emotional wellness, frequency of exercise, intimacy and support, caretaking tasks” – don’t stop here. The monitoring of other physical parameters, such as sweating, flatulence etc. may improve population health by generating entirely new diagnoses, and possible patients can be easily targeted by personalized drug- and other health advertisments.
    It may also help to assess physical well being and happiness in 5 minute intervals (easily done with smartphones); sophisticated software may be able to associate deficits in well being with certain activities and/or social contacts, and give tailored advice (e.g. restrict your attendance at daughter’s ballett show to 2 hrs).
    -paternalistic approach: that should be adressed in other areas as well. Software that helps with engineering projects (e.g. bridge construction) or aviation may allow direct consumer input, such as detailed discussions with the pilot on why we are circling O’Hare for the 3rd time and how to end this.
    -we have to make sure though that patients who are getting really sick and/or need to be hospitalized have a representative who is taking the time to manage their personal health data in the interim. It would be too bad if medical illness would endanger the ongoing success of the PHR.

  6. J.D. Kleinke says:

    Um – if you’re bleeding to death, undergoing open heart surgery, having a major joint replaced, delivering a high-risk baby, or fighting a life-threatening infection, yes, you need to be in the hospital…and your entire electronic medical history should be available to everyone at that hospital, to avoid medication interactions, reduce errors, and save money on redundant and often dangerous diagnostic testing. The theory of the PHR was a consumer-assembled workaround for the sad fact that competing hospitals have no real interest in sharing data about us.

    Today, you can walk into a casino, and within five minutes (with your permission), they can access everything about your employment, credit, mortgage, and residential history, and in five more, liquidate your entire net worth. Walk into a hospital across the street – perhaps from the chest pain triggered by blowing that net worth at the craps table – and the hospital will know nothing whatsoever about your medical history, but what you can mumble through the chest pain and sedation. But thanks to the tattered insurance card in your wallet and an 800-number, they will be able to find out how much of a co-payment to collect from you…

    • pcp says:

      ” if you’re bleeding to death, undergoing open heart surgery, having a major joint replaced, delivering a high-risk baby, or fighting a life-threatening infection, yes, you need to be in the hospital”

      Your ACO will mandate those conditions being treated as an out-patient.

      • rbaer says:

        I am not so sure whether admission is really necessary in most cases. Synergies created by free information flow will more then compensate for minor shortcomings of ambulatory intensive care, if all the stakeholders are committed. We can do more and more without meatspace.

  7. MD as HELL says:

    Just have your past history tattooed on your chest. That is the firstplace I will look for imprtant stuff. I will not be simultaineously able to direct your resuscitation and run your DNA for a name to obtain your records. I probably should intubate you and defibrillate you before I know you had your appendix out .

    If you want your information with you, put it on a thumb drive and carry it with you. Do not expect a huge IT infrastructure to belch your records up from a retina scan.

  8. Lehr says:

    Nicely put and a great case study for B-school. I think PHRs are just a natural extension of the EHR. If a provider doesn’t use one, the PHR becomes problematic. I’m a long time user of PAMF’s system and find it useful to track and review things.

    As the provider community gets more sophisticated in EHR (labs & other encounters) use as well as HIEs and begin coordinating care, PHR use will also mature and moph into a real patient utility

    Legacy systems tend to add-on PHR functionality and actually contribute to the problem of coordinating care since most systems don’t talk to each other……just building bigger silos. Hopefully Stage 2 MU will help drive us in the right direction

  9. Ben Wilson says:

    I think you are right. A personal health record needs to be more like Facebook than an electronic medical record. If it is going to be sticky, it has to have all the practical functionality that Kaiser provides with the personal connection of Twitter or email with the health context of WebMD. I guess this is a tall order, but with the incentives created by accountable care and the integration created by health information exchange I think there is a lot opportunity going forward. Thanks for sharing this leg of your journey.

  10. Dan Spinato says:

    I completely agree with this article, a total eye opener for those who don’t understand what’s happening. Great effort in breaking it down!

  11. While Google could nut successfully pull this one off, there is no doubt that as healthcare continues to change and evolve a public PHR will take root, just as consumers now tend to take greater note of their credit score on a week-to-week or month-to-month basis. Great post!

  12. Paul B. says:

    Great article. Although it’s alluded to in the article, I have a somewhat simpler explanation for the failure of Google’s PHR effort. The vast majority of people are healthy the vast majority of the time. They’re simply not interested in inputting, collecting or looking at their health history because its hardly ever relevant to them.

  13. CCaufield says:

    I agree that that PHRs applications will have value, even beyond niche markets. We have an enormous chronic disease problem which accounts for almost 50% of healthcare costs. I think PHRs can have an impact on lowering these costs. Conditions that need to exist include 1.) an individual’s monitoring of their chronic condition(s) is aligned with industry incentives; 2) reimbursement for online interactions are more widely reimbursed so there is an incentive for the physician; 3) authentication is simplified 4) if there is interoperability between systems; 5) data is autopopulated; 6) there is more to the PHR than data storage – as many have said, a social component; educational component and alert systems. Lastly, it would be ideal if a consumer’s personal healthcare costs are a part of the PHR., enabling them to see how costs are impacted by their decisions. There are efforts in all of these areas, but we have a ways to go before we see PHRs able to take advantage of the developments. Thanks for your thought-provoking post.

  14. Dave Chase says:

    Great insights, Missy. All these are legitimate obstacles. Your insight and contributions will continue to be felt and appreciated. I’m looking forward to hearing your next step.

    As I mentioned in my piece on Google Health (which was really about the flawed reimbursement model we have) – Why Google Health Really Failed-It’s About The Money (linked to if you click on my name), I’m pessimistic about PHRs in the wacky fee-for-service model that creates many perverse incentives. I’d argue there’s a disincentive for a typical MD to connect in some way to a PHR.

    In contrast, I’m optimistic when it comes to the highly successful models that are a mass market version of concierge medicine that are affordable for anyone who can afford a cable bill. In those scenarios, there’s ample motivation for a MD/clinician to connect to a patient electronically. Whether or not the PHR is the linchpin of that connection remains to be seen. When the individual’s interests are aligned with the clinicians as they are with Direct Primary Care, adoption barriers melt away. Read this piece for one example of a practice where patient and doctor goals are aligned – http://techcrunch.com/2011/06/19/the-most-important-organization-in-silicon-valley-that-no-one-has-heard-about/

  15. Deron says:

    Let’s face it, people today will not use something or take a specific action unless it is clear how the results will benefit them. Patients have not been shown how PHR can benefit them. It can save the healthcare system money and increase safety, but an individual who is already not taking the best care of himself will not see these benefits.

  16. Curly Harrison, MD says:

    Missy,

    Great eulogy. This all got off on the wrong foot. President Bush declared HIT safe and efficacious in his Executive Order establishing the ONC and Brailer as the big boss. Why did Brailer and you participate in the movement to avoid any oversight of these devices, including PHRs, EMRs, and CPOEs, by the FDA and /or others?

    Didn’t you know that the Brailer supported CCHIT was a baby child of the HIMSS, the trade and lobby group of the vendors, designed to legitimize devices that had not any vetting for safety? Didn’t you know that HIMSS and CCHIT NEGLECT safety, efficacy, and usability of these devices?

    You ought to consider these in your next eulogy for PHRs, and I wil shed a tear for what could have been.

    Curly

  17. Young people don’t really need PHRs and  the value prop for older persons with medical conditions isn’t worth the agony of trying to maintain something that at this stage of the art is incomplete, rather inaccessible, inflexible, and, as Missy states, unsociable. The future isn’t here quite yet.

  18. With all due respect, I think it delusory to attribute the demise of Google Health — and all its predecessors who also have failed — to lack of demand or the absence of a game or social networking orientation, or the absence of portal-type services like refilling prescriptions, scheduling appointments and exchanging e-mails.

    Google’s search engine disrupted the world because it met the needs of people to quickly and easily access information. Google did the work, the user got the information they wanted. Then Google met a need for advertisers, it gave them exposure to consumers. The result: incredible acceptance by both consumers and advertisers, growth and financial rewards!

    With Google Health, Google did exactly the opposite. It created a system in which the user had to do all the work and the providers were taken for granted and all but ignored.

    The simple truth is Google Health didn’t meet the needs of the two groups who count in healthcare: patients and providers. Patients want convenience and to know their records are secure, yet Google Health required that they become data entry clerks, and stored their records on breachable Internet-accessible servers! Providers don’t want to be bothered unless they benefit in a meaningful way, yet Google Health did nothing for them.

    The lesson I learned from the failure of Google Health is that providers must embrace a personal health record system or it will fail, and that convenience, ease of use and a sound business model are critical. And that despite one’s size/prominence, financial resources, or technical smarts, they will fail if they do not to meet these requirements.

  19. Deborah S says:

    Excellent article Ms. Krasner! But have faith – because in 1993 (18 years ago!) I participated in one of the first EHR/EMR demonstrations to an auditorium fillied, glaze-eyed physicians and other health care providers in a mid-sized middle America healthcare setting. There were NO takers, no early adopters. But time marched on and many healthcare providers have successfully adopted electronic records – but so many more have to climb on the wagon. Once that is accomplished; I believe Google Health and all the others will realize that they were simple WAY ahead of the curve. Give it a few more years. But great effort! Sorry to see Google Health go.

  20. Thank you for your knowledge. I do wish to address the seemingly problematic way we have left the individual citizen out to dry, and that is Email. Much of the dancing about in the EMR, PHR is the communicating with patients via HIPAA compliant means. The hodgepodge of consumer level email accounts and password recall is mind numbing even for technologists such as myself (though I have forged my own personal password construction heuristic) a typical citizen needs email for myriad of personal and legal matters that really needs a sanctioned mailbox. Hence my bringing up the need for the Government to issue unified messaging in-boxes, similar in scope and legally protected as the physical mail.
    We need email address as easy to recall as our address, as easy to figure out as someone else’s address and as easy for entities to use through a pay to play construct (yes this mailbox would require paid postage on email/fax access to keep the spam out and support the infrastructure).

    I just see that without a secure means of communicating that remains post corporate upheaval, post switching home ISP and people moving about the country we will never be able to offer any level of PHR to the populace.

  21. Steve Yergan says:

    Excellent points. I also believe that the consumer was not, and is not ready to manage their own information in numbers sufficient to maintain Google’s interest. I describe the consumer’s readiness in a post on my own blog, called “The 7 stages of managing our health information”: http://www.healthtactics.com/Blog/2011/07/05/the-7-stages-of-managing-our-health-information/
    I believe Google exited too soon.

  22. Terrific examination of why PHRs aren’t seeing wide adoption. All of Ms. Krasner’s points are dead on, with her first being my #1-with-a-bullet: until patients are empowered to be true consumers of health/medical care, we’ll be stuck in the starting blocks, unable to effect any real change.

    Once a short-term solution to stiff wage controls during WWII had companies using health insurance benefits as a loyalty-generator, what followed was a swift and comprehensive move to guarantee a continuing paternalism by providers AND insurers: mandated employee health benefits. There’s a lot of revenue at stake – the US health care spend is $2.3 trillion, and everyone with a piece of that massive pie wants to ensure their slice stays bodacious.

    Consumers have no perception of a direct connection to the money spent on their health care, since third parties are so firmly entrenched at the pie plate. Empowerment will only come with an end to the ‘other people’s money’ model, with patients able to access cost data and incentivized to shop for medical care the same way they shop for homes, cars, and other big-ticket items. Because it isn’t ‘other people’s money’ – it’s ours, just being paid out by other hands.

  23. I disagree. The corporations LOVED having the ability to lord over the worker with their healthcare benefits. This is why they defeated single payer in the latest go round. Single payer will bring even more paternalistic healthcare. The only way to incentivize the system is to make score cards for providers, and educate the masses in how to use these to access the most prudent care they can find. The money will eventually stabilize and then the patient (I do not use consumer as consumer has the connotation of voluntary, healthcare is not always voluntary) will have to choose their provider. The market will be for those groups that can create usable information portals to help patients better recognize who best fits their needs. The PHR should be portable and I do not wish mine to be tied to any organization or provider. That is why Google+ and youtube will totally transform the landscape putting the patient back in charge of their healthcare MANDATING that providers feed their data to their Google PHR to share amongst those they wish to share it with, be it licensed individual or trusted friend from around the world.
    WOrrying about the Trillion $$ pie is not the way to go about it. Worry about how you want to see it work for you the patient, and then consult with other patients is. Just my $.02

  24. As I read these comments posted by informed people, I can’t help but wonder what planet they live on! Is it the same one I live on?

    I don’t see the failure of PHRs to date in terms of labor-management conflicts, tethered vs untethered systems or, for that matter, other grand philosophical questions such as good vs evil. And I don’t think the average consumer does either.

    To those of you who insist consumers don’t want to control their medical records and have them available for their care providers, I ask three questions.

    Have you ever asked people who are ill and/or frequently see one or more doctors — they are a large population numbering in the many, many millions — if they want their doctors to be able to access their medical records at the point and time of care?

    Have you ever asked people how they feel about having their medical records stored on an Internet-accessible server?

    Have you ever considered that consumers haven’t embraced PHRs because those that have been offered, including Google Health, HealthVault and others, are grossly inconvenient and not secure from hackers and theft?

    Personally, I have yet to meet a consumer who doesn’t want their medical records available when they seek care. The people I talk to can’t wait for their doctors to have access to their complete medical record!

    Also, I have yet to meet anyone who doesn’t balk when you ask them if they mind that their medical records stored on web servers. They want their records to be secure and they want to control who can access them.

    And I have never met anyone who even suggests that their medical records should be on Facebook-like social networks or that they want their care tied to some form of online game! But I have met many who say they would never put their medical records or information on a social networking site (a recent study confirms my anecdotal evidence).

    Thus, I conclude that either we are on different planets or we are looking at the world of personal health records from opposite vantage points.

    I attribute the failure to date of PHRs, whether they be Google Health or other failed PHR products, to the fact that they don’t do for consumers what consumers want and need. They were developed by people who had a technology they wanted to deploy, a standardized approach to the use of computers, or a preconceived solution to a problem rather than people who set out to fill a need.

    The Internet is an incredible convenience, but it can’t provide the security consumers want. Clicking through lots of windows works for many applications, but doctors and patients won’t put up with doing so when it comes to health records. And placing the burden on consumers to keep their records up to date is a non-starter. Yet this is what has been offered to consumers. Is it any wonder that consumers didn’t embrace them?

  25. J.D. Kleinke says:

    You are exactly correct, Merle. The chronically ill in particular want all that from health information technology. Patients also want instant access to the latest and greatest diagnostic technologies, surgeries and medicines – for free – and with no risks of side effects or bad outcomes.

    The health care industry sells hope, a limitless and priceless commodity, to a world full of limited resources and hard realities. In health care, people’s capacity for self-delusion and wishful thinking goes into ferocious overdrive. We want instant access to all of our medical data wherever we might turn up in the system – we just don’t want anyone to – um – store it anywhere, we want it to be perfect, and we don’t want to pay for its servicing. And the funniest part is we don’t want “the wrong people” to see that data, for fear that – what? – they deny us insurance? Guess what – we all give them exactly that right every time we apply for insurance.

    The idea that our medical data is private is another happy little fantasy borne of the abject fear that takes over when our health and well-being are threatened. The horse left the barn years ago, and it’s silly and sad watching the health care industry spend a few billion per year on bullshit processes and paperwork (“please sign here to acknowledge you’ve received a copy of our HIPPAA policy”) pretending to catch it.

  26. Correct J.D.
    As a patient, I too want my cake and eat it too. It is the issue that whoever can bridge two competing, seemingly polar opposite issues under one rubric will be the capitalistic “winner.”

    “Personally, I have yet to meet a consumer who doesn’t want their medical records available when they seek care. The people I talk to can’t wait for their doctors to have access to their complete medical record!

    Also, I have yet to meet anyone who doesn’t balk when you ask them if they mind that their medical records stored on web servers. They want their records to be secure and they want to control who can access them.”

  27. JD and Claude,

    I’m not we are on the same page. If you are saying that consumers have unrealistic and unattainable expectations about their medical records, I must to disagree with you.

    They may have unrealistic expectations about healthcare and what doctors can do for them, and many unrealistically may want someone else to pay for their care, but I think their expectations about medical information are perfectly reasonable and doable.

    Doctors may not be able to cure their chronic conditions or restore their health but we certainly can meet their desire for their doctors to have access to their complete medical record at the point and time of care. And we certainly can give the patient control of their aggregated records. Best of all, we can do both without forcing every doctor to adopt an expensive, bloated EMR system or building elaborate networks costing hundreds of billions of dollars!

  28. The community at CF.com doesn’t keep PHR! and they have so many records in their personal files…
    I love the idea of beginning the PHR with something simple.
    Creating a “life list” of meds…like a life list of birds.
    or passing around the sonograms…etc…something simple

  29. Claire says:

    I highly disagree with your comment that PHR’s are boring and too generic. On the other hand, I think that they are crucial for patients to become independence and take life into their own hands. My company recently produced an app for iPhones and iPads called CladeHealth Tracker which is a personal health record that tracks the multifaceted aspects of your health so that you can maintain balance, regularity, and organization in life. Our website is http://www.cladehealth.com. CladeHealth Tracker keeps all of your health information in one place so that you can have it on hand whenever it is needed. This information includes details on your various healthcare professionals, your medications, your past procedures, your conditions, your family’s health history, any advance directives you might have, your health insurance information, your allergies, and your lab reports. It also includes the ability to bridge associations between healthcare professionals and their prescribed medications, procedures, diagnosed conditions, etc. If you could check out the website and maybe mention us in a blog it would be really helpful! When it comes to a person’s health, it is so important for the individual to be aware and in charge. Our website is http://www.cladehealth.com if you want to check us out.

  30. Mark says:

    Great article! One observation – what the author talks about and most respondents here refer to is really not just a PHR. After all, PHR means Personal Health RECORD. It’s actually the Patient PORTAL, which allows access to a host of capabilities including not just a PHR, but web-based appointing, trusted/vetted health care content (e.g. WebMD), prescription refill requesting, secure patient-provider messaging, and others.

    Having worked in Health IT over a decade I think it;s also important the we all use standard terminology.

    All that said, I agree that a major challenge for the Patient Portal, the PHR, the EHR, Telehealth and other technology-based tools for healthcare is the business case. Usually, these tools benefit patients or providers, but the expenses are incurred by the health care organization. We have to do a better job of determining how, in the long-run, it’s in the best interest of a health care organization or a company like Google to fund, develop and deploy these tools.

    Missy, thank you for your pioneering work!

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