By 
Google Health’s unveiling last week and Microsoft’s HealthVault launch last October
are important milestones in the evolution of Health 2.0. Both of these heavyweights have the resources and potential to improve the health consumer’s customer experience. I have followed the active (and important) conversations about privacy concerns, HIPAA, and Google Health’s terms of service, which are well represented by Erik Schonfeld’s post on Techcrunch and Larry Dignan’s post on ZDnet. And I read with interest Google’s rapid response offered by Google Senior Product Counsel Mark Yang.
What’s missing from all of these conversations is the elephant in the room: Do consumers really care about having online personal health records?
Current evidence suggests that less than 3 percent of health consumers
maintain a PHR online, according to Lynne Dunbrack, program director at
Health Industry Insights, who commented in a recent interview. It
reminded me of the post on The Health Care Blog a couple of years ago,
PHRs, EMRs, and pretty much useless surveys.
And while Google trotted out some great enterprise partners last week
for its announcement, I didn’t hear any consumer voices or testimonials
on how Google Health will fulfill an unmet need. To me, PHRs and
electronic medical records remain an industry-driven vision, not
a consumer-driven one — focused on efficiency and reducing costs. It
seems we’ve lost sight of whether the consumer really desires and is
willing to participate in these services. What are the circumstances
for using a PHR and do the benefits outweigh the perceived risks?
Google Health does seem simple, straightforward, and easy to use,
albeit with some major holes in content and functionality that I
imagine will be filled over time. However, I struggle to see how it’s
creating value for the average health consumer. Yes, data portability
is important in some sense and does add a level of control for the
consumer, but how much work is required by the user to create this
asset? And how important is data portability to the consumer? We all
remember the predictions of the paperless office. The “paperless
record” feels like this decade’s version of the “paperless office.”
The best news around this announcement is the upcoming Google API that
will allow others to create applications on this platform. There are
myriad privacy and security issues with data moving from Google to
third parties. For example, I’m not sure what personal health info was
sent to Daily Apple when I signed up for their widget, nor am I fully
aware or comfortable with Daily Apple’s privacy and security. But
despite this, I think the API holds the most promise for consumers.
The bottom line, for me, is that Google Health feels like a good,
incremental step toward putting more control in the hands of the health
consumer. People should have more information about their next
treatment or medication than they do about their next book or
automobile. Without a clearly delineated consumer benefit, however,
this is a platform waiting for a killer app.
Keith Schorsch is the founder and CEO of Trusera.com, a social health Web site.
Categories: Uncategorized
Dr Robert Carl Parisien says: I visited the google health care blog site and was tremendously disappointed. Its badly organized and difficult to use.
PHR system is premature because the industry has not yet agreed on a single PHR definition and many stakeholders are currently experimenting with various models, policies, and procedures. In short, there are no generally agreed-upon best practices to reference at this time.
Regards
http://www.readabouthealth.com/
Many PHR products are currently being offered to consumers, but a single definition of a PHR has yet to emerge.In addition to important medical information such as test results and treatments, a PHR can include diet and exercise logs. At the same time, it is important that consumers clearly understand that a PHR is separate from and does not replace the legal medical record of any provider.
Aloha,
Thank you for these very enlightening posts!
We’re mapping a Connecting Care system for Maui and Hawaii and you’ve provided us with very helpful ideas.
We would add that people who want to age in place and their caregivers are also potential “consumers” of PHRs which are designed to connect with EMRs and personal digital health monitors at home.
Our challenge has been to get PHR/EMR/RPM companies to get past product myopia and start building those “cathedrals” articulated so well by Joe Coughlin at the MIT AgeLab.
Do any of your readers know of anybody trying to aggregate and integrate connected care systems elsewhere which are truly consumer/caregiver-centric?
Thanks again,
peter@mauiagewave.com
Google Health–Blue Cross Blue Shield of Massachusetts just made a big announcement about a new agreement with Google Health. As a healthcare consumer (currently a BCBS member) and someone who understands how customer relationships should be developed, continue to be baffled that the consumer is once again left out of the equation. BCBS offers a member self-service program on their website. I have used the program this year and it’s been an interesting experience. I’ve called my providers’ billing departments and BCBS to ask questions about the claim details I’m seeing online and the response I get is, “why are you bothering to look at this information? If you don’t get a bill, leave it alone, etc.” Basically–the judgement that the consumer has no idea what is going on. There are some of us out there who are educated healthcare consumers, in my case it’s because I have chronic illnesses and I have had to change my health plan multiple times because of change in employers and changes decided by employers (i.e. dropping to one health plan, etc.) I have been looking for a forum to provide feedback but haven’t found one that I think is a good fit.
The meaning of … PHR (weblog.lifesensor.com)
Correct. I asked my family what they would do with a PHR. Silence. Consumers don’t care.
But Health 2.0 can’t care that they don’t care.
Sometimes, just sometimes, consumers don’t know what they want, or need. Like a PHR. And, more than a few of the endless apps being developed at Health 2.0 start-ups are going to need the data behind a PHR (hopefully in a portable construct, like CCR).
Ask the average consumer about Transunion, Experian, or Equifax, and you might get the same reaction as you do for the PHR. Duh? Do consumers really care about either? Not really. Yet, without this silent network of transaction data aggregators, all feeding financial “encounter data” for my “financial health summary,” where would we be? Without a credit report, that’s where. My credit report is the “financial PHR” that makes it possible for me to walk into a dealership and buy a car, in under 15 minutes. Credit data is indeed a mundane consumer interest, until you need it.
And so it will come to pass that a small, portable record is a mandatory first step to building out Health 2.0 — a means to an end to the real applications consumers are dying for (no pun intended).
I say YES. Great deal. I have kids…my records…I want to access them easily/it keeps Doctors in check, they have to keep up on their files.
I agree with Reed, not necessarily about the McKesson product, but the patient-perceived value of PHRs in general. When I was at Aurora Health Care in Wisconsin, we offered a highly functional patient portal that included a full PHR. About 2,500 new people sign up for the portal every month, hundreds communicate with their doctor and request appointments, and thousands pay their bills. Only a handful take advantage of the PHR capabilities. Until and unless a more exciting and compelling case can be made for PHRs, most consumers are going to yawn.
The PHR market seems to be evolving with multiple providers. Credibility, commitment, and a sound business plan as well as customer support are critical issues, much like EMRs.
CCHIT certification and interoperability may also play a critical role, for importing data into an EMR.
The big question is will consumers be comfortable with trusting their personal health information to a corporation whose primary business model is advertising, search, maps and other diverse applications?
Healthtrain Express
In my opinion consumers want “actionable” products that have meaningful impact on their day to day lives. Products that can help them deal with issues that impact their time and their money. Checking symptoms and figuring out what to do about them is far and away the #1 reason consumers go online for health. As a result, products that can answer questions like “should I see the doctor?” “When?”, “Where should I go for care?” are what consumers want and need. The resulting data from these products, stored in a PHR or anywhere else are simply a by product of the more meaningful product encounter.
Products like the one recently rolled out in Beta from FreeMD (www.freemd.com) are built with the intention of helping consumers deal with real issues on a daily basis. PHR’s are easy to build and as noted by the author in little demand.
In my opinion, to focus on PHR’s is to miss the forest for the trees.
Great discussion, all. Appreciate many of the points made here and wanted to respond to a few comments as well.
First, John from Chilmark makes some interesting points about the value of PHR, Kaiser’s 30% penetration, and “what if” we could extrapolate that level of adoption nationally. Whether you call current PHR penetration at 3% or 6-8% penetration as John claims, it’s a huge jump to 30%. I don’t think you can effectively use Kaiser as an example of what’s possible as it leads to overly aggressive conclusions.
Kaiser is a very unique case in that it controls its provider network. In reality, the physician group practice market is highly fragmented, with only 5.3% of practices having more than 50 physicians like Kaiser (source: SK&A Database). Nearly 75% of US group practices have fewer than 10 physicians. How much effort will it take to create the linkages (and consumer value) to connect to providers and their data in this highly fragmented environment? While physicians are increasingly adopting EMR systems, I’d argue that it will take many, many years to meet a 30% penetration goal for consumers using PHRs, unless there are more compelling killer apps connected to the Google and other PHR platforms to drive faster consumer adoption.
Second, Tom and Georg Van Antwerp make several points chronic conditions and “the 10% of people who drive 90% of costs in the health care system.” The chronically ill and their caregivers can clearly benefit from better online tools. But are Google and other PHRs’ goals to meet the needs of the chronically ill or is a broader mandate to reach all health consumers? I’d suggest it’s the latter. Again, this is a reference to PHRs and EMRs being cost-driven programs. Where’s the near term consumer benefit to generate adoption?
Finally, I wholeheartedly agree with Dr. Julio Bonis’ point of view that current systems are viewed in terms of saving costs and discovering what ones are most relevant and useful to solve problems for the health consumer is critically important. Similarly, Henry Albrecht makes a great point that killer apps are those that solve problems. I agree with him that consumers do not think of themselves as the sum of their conditions, test results, or symptoms and want to be treated as whole individuals. That is part of the sea change that is occurring, where individuals are increasingly taking charge of their health and are seeking those killer apps that put them at the center of their health decision making process.
Keith, good discussion starter.
Killer apps are those that solve problems. The bad/good news is that there are really big health-related problems that need to be solved… for the country, for health plans, for health systems, for employers and for people. One disconnect is that people (consumers, employees, grandma…) do not think of themselves as lipid counts, LDL cholesterol levels, family histories of cancer, hospital visits, test results, claims, etc… They are people and (whether actively in the healthcare system or not) care about things like how they feel, how they interact with others, how stressed they are, how fast they bounce back from challenges, etc…
The killer apps will be the ones that connect (in a social and/or incentive-driven way) these intrinsic “people motivations” to the economic motivations of key subsets of the healthcare industry. (Key subsets because only subsets will ever get the whole consumer-owned thing). This may mean PHRs for some, wellness programs and 100% preventive coverage for others, fitness devices for others and (of course) more smoking, drinking and fad dieting for some.
Platforms that allow for standards-based interoperability (and mashups!) are inevitable, valuable for the economy, and (with a lot of iteration) revolutionary for the both the less-than-healthy average American, the chronically ill and the performance minded corporate athlete.
So thanks to the big software companies.
I agree with you.
I am a family doctor from Spain who leads a PHR project: keyose.com
I believe that PHR will become really valuable tools for patients.
But not the way Google-Microsoft and the big ones are visioning.
From my point of view the current systems are thought in terms of saving costs. They have a solution (technology) and are searching a problem. They are searching the problems in the wrong side of the equation: doctors and healthcare organizations.
We need to ask the questions to the patients: what is relevant to you? how can I solve this problem?… and only after this ask: can technology help us to solve this problem?… or can be solved by non-IT solutions (paper)?
I visit chronic and palliative patients at home. And I am convinced that the future of medicine will be on that arena: at home health-care. Patients love to be cared at home (if quality of care is equivalent to hospital care). And in many cases it can be (with the help of technology).
Patients main concern is privacy of data. And any clinical doctor can understand this risk (however that has been the main concern of clinicians community about this PHR issue).
Take for example the codification used by google health: it is a medical vocabulary! (ICD, SNOMED)…
But patients wanna talk their own language. The current PHR are giving importance to the things doctors and health-care organizations give importance.
We need to identify the things that are important for patients! That will be the real revolution…
For example patients give importance to privacy… so why dont we provide a totally anonymous Personal Health Record system?
Keyose is totally anonymous (for example). No name, no email, no IP registered… confidentiality is guaranteed.
Yeah, yeah the consumer is really important here and it really is a big unknown if consumers will adopt either Google Health or Microsoft HealthVault in large numbers in the forseeable future.
What is going to be fascinating to watch is the flurry of parternships and annoucements that are taking place though over the next 12-18 months. See what kind of local flavors this takes on and if partners are willing to go with both Microsoft and Google.
For example, Google Health has already signed up Beth Israel and BIDPO. Now they signed BC BS of Massachusetts who dominates the health insurance market inside of the 95/128 beltway in Eastern MA. Ramifications of this are quite interesting. Imagine it will force the hands of other smaller regional plans in metro Boston area like Tufts Health Plan and Harvard Pilgrim to play ball too eventually too with Google too.
Interesting to see if this also increases the leverage of Google with the 800-pound gorilla on the delivery side in the Eastern MA market in Partners Healthcare so they will sign on as a partner. Interesting times indeed.
‘More data means more law-suits’..I agree with Mike completely.
The current healthcare system does not allow PHR to be useful. It can only become handy for insurance companies to deny the claims.
Doctors alone can enter medical information in ‘medical terms’ and patients should not be allowed to enter/alter the data for obvious reasons. Who is responsible for the ownership of the data? What about the standards as many companies/organizations are trying to promote their own
interests. Why doctors should be interested in spending more time in the so called ‘PHR’.
Bottom line is, PHR can work in a single payer system when it is tied to claims.
How on earth PHR can reduce costs or help challenge the insurance claims? More the data the insurance companies have, easier for them to find reasons to pay less or nothing at all.
If your insurance company knows that you had a head-ache a decade ago, they will link it as a pre-existing condition for your current health issues and deny your claim.
Besides, doctors hate to go through another set of administrative hassles. The doctors will be forced to go for more ‘defensive medicine’ as more data means more law-suits. The end result is more and more expensive healthcare.
Forget about PHR now. Cut the healthcare cost drastically. Let us not waste time in talking about irrelevant things.
While I agree that there certainly is and can be value in a PHR for consumers, I think this is the right discussion. Do consumers even know what a PHR is and that it is an option for them? I think Forrester’s data shows that something like 75% of consumers don’t.
I do buy Tom’s argument that it’s the 10% of people who drive 90% of the healthcare spend that matter. It would be interesting to know what percentage of those know about PHRs and are active in managing their health.
The other challenge is usage. Certainly, duplicating the Kaiser model would have value, but that’s not going to happen anytime soon. A few months ago, I got to interview the Kaiser PHR owner and the Aetna PHR owner. Very different usage statistics. Both good tools, but Kaiser gets 5 visits while Aetna gets an average of 1.7 visits.
The final issue which the WSJ talked about a few weeks ago is whether doctors will trust PHRs. I think the initial feedback was no.
We should certainly continue down the road, but there are some structural hurdles to success.
http://www.georgevanantwerp.com
I think this post is on the money for 90% of patients. For most of us PHRs solve no problem at all.
However, often patients with serious and/or chronic conditions are ‘self-motivated patients’ who spend a lot of time researching and being involved with the management of their condition.
Further, given people with chronic conditions drive most of the cost in the system, I see a potential for PHRs against that segment – arguably the most important segment to address. I think Permanente’s case studies relating to driving down the costs of chronic conditions by improving care via PHRs and other tools, suggests that PHRs definitely add value in this area.
So the post is 90% right, but 10% wrong, and most of the cost lies in that 10%… so maybe the post in 100% wrong?
The other side of PHRs that I don’t see discussed is the potentially enormous costs savings available to patients with acute and/or chronic health problems.
The potential for patients with long term acute problems to save lots of money by challenging insurance company payouts seems to me to be a huge missed opportunity. Pulitzer Prize winning journalists Donald Barlett and James Steele report in the healthcare expose, Critical Condition, that insurance companies routinely dismiss claims they should pay and down level claims they do pay so they pay out less than the patient should receive. Patients rarely if ever challenge the insurance because the billing and claims systems are simply too arcane.
But if you built a personal health system that could automaticaaly find and challenge dismissed and down levelled claims and recover the full amount due, it could mean thousands or more to patients who are often in care.
That could be a big incentive to do whatever it takes to take part.
The other side of PHRs that I don’t see discussed is the potentially enormous costs savings available to patients with acute and/or chronic health problems.
The potential for patients with long term acute problems to save lots of money by challenging insurance company payouts seems to me to be a huge missed opportunity. Pulitzer Prize winning journalists Donald Barlett and James Steele report in the healthcare expose, Critical Condition, that insurance companies routinely dismiss claims they should pay and down level claims they do pay so they pay out less than the patient should receive. Patients rarely if ever challenge the insurance because the billing and claims systems are simply too arcane.
But if you built a personal health system that could automaticaaly find and challenge dismissed and down levelled claims and recover the full amount due, it could mean thousands or more to patients who are often in care.
That could be a big incentive to do whatever it takes to take part.
PHR/EHR is not the immediate need. Once we have a reasonable healthcare system, PHR can provide some value.
Around 50 million are uninsured and another 50 million are under-insured; these 100 million (out of 300 million population) do not go to a doctor or hospital other than emergency rooms. How can they create ‘Health Records’ even if it is hand-written?!?
Right now, what we need is reasonable access to healthcare. It can only be achieved ONLY by cutting the expenses AT LEAST by 50%.
Without providing care to these 100 million uninsured/under-insured, we spend over $2.1 trillion a year; at the same rate, it will take $3 trillion to provide care to everyone. It is $10,000 per person per year. It means, we need to cut cost at least by 50%.
Let us not waste time talking about EHR/PHR/etc which will do nothing in the current system. Get rid of the current system and start from scratch.
I’ve always wondered about this. Do consumers care about a digital health record that they could maintain? Forget about an online one – which raises issues of privacy and confidentiality – what about privately held records? I’ve spoken with several folks who work at companies that are customers of WebMD’s corporate services (that includes the WebMD Health Record Suite allowing employees to maintain their own personal health data) and none of them volunteered that they diligently maintained their health profiles. It’s a non-work tool, and as with any such tool made available that does not immediately impact on one’s work, it is visited sparingly, if at all. Perhaps anyone who has access to such tools in a work environment could comment on this?
This exemplifies a curious aspect of healthcare: decisions about one’s health are often what in marketing is referred to as “low involvement” except when it’s life threatening. Involvement is basically a decision cycle that goes from need to research, assimilation, and decision. Most non-life threatening health decisions (such as a headache, flu, a sore throat, etc) are impulsive and undertaken without much thought, even if it entails a visit to a doctor’s office; when one faces something more serious is when we begin to think deeply, to research, and evaluate alternatives. Viewed this way, it is easy to see why employees are likely to be blase about recording their health data in such tools – it has a low value in our expectations of its usefulness in our daily lives when we’re healthy. The same would presumably hold true with the online PHRs being rolled out by Microsoft and Google, with the added complications of worries over privacy issues.
William,
Best wishes to you with your kidney transplant. I appreciated your comments a lot, but disagree that PHRs aren’t valuable for people who only see the doctor sporadically. As one of the latter, i know that my medical history, spotty as it is, will come in handy someday; and just because my medical care has been sporadic, i know that the actual records of it are scattered in files all over the place, including providers i don’t even remember or who aren’t in business anymore. It makes me uneasy every time i see a new doctor & have to give a health history, because i know it’s subject to the vagaries of my memory on the day they happen to ask. I’d love it if i could just tell every doctor i see, when you’re done, send the test results / prescriptions / diagnosis etc. to my PHR. Then i don’t have to worry about what i remember or not, i don’t have to think at that time about whether it’ll be important later, i just know that it’ll be there. (Then maybe the PHR provider can offer a value-added service of having a diagnostician periodically review my file when it gets bloated & make suggestions about what i need to keep & what i don’t, what tests or screenings i should be thinking about getting, etc.) But the value of knowing that all the info will be there, and the value of not having to think about it or keep track of it myself … that’s value i can really appreciate.
The two things that would hold me back are:
(1) if most of the providers i use have no idea how to upload the stuff when i ask them to (or have policies that say they can’t do it even if i ask them to … which is crazy, but probably common, and i think it’s a perfect illustration of the problem that the providers think my health information is really their practice & billing information)
(2) uncertainty about the rules that govern what the PHR provider can do with my info. I know that Google & Health Vault have a lot of written assurances about this stuff, but i have little confidence in it without some broader framework that makes it clear those assurances aren’t just voluntary on the PHR’s part. I want to know that they can’t change those policies on me without my express permission, that there are real penalties for noncompliance, that some independent & trustworthy third party will be actively & continuously reviewing their compliance, etc. (That’s my biggest problem with HealthVault – the terms of service they describe sound pretty good, but the terms of use that you have to agree to when you sign up are something else entirely.) Also, assurance that if they change the rules and/or i don’t like their service, i get all of my info back, with no copies left behind, in a useable format, with no penalty, etc.
Keith,
While Google and Microsoft are getting most of the attention, it’s McKesson’s RelayHealth that is winning the most business. You need more than just a PHR for patients to use a system like this. Features like online appointment scheduling, prescription refills, test results, and communication with providers are the things that create value. Until Microsoft and Google understand this, they won’t get very far. (Full disclosure: I am a McKesson employee.)
Keith, I agree and disagree.
Yes, value is the play. How much value can any of these efforts, be it Google, Microsoft, Dossia, whoever, can deliver to the end consumer will define the success of these initiatives. Right now, so much focus has been on privacy and security that we have really lost sight on what will truly drive this market, delivering benefits (value) that outweighs risks (privacy/security).
Right now we are in a chicken and egg scenario wherein value will be delivered when we have good data to work with. Unfortunately, that data is at best, tied up in some EMR and at worse, still on a paper chart. If anyone can crack this nut, or at least have the patience and resources to make it happen, it is someone like a Google or Microsoft.
Where I disagree is in your characterization that this market has seen little adoption, quoting Dunbrack @ IDC. This is a dated view. While nationally, adoption still sits at 6-8%, those instances where a PHR is well-structured, promoted and continually improved have seen some remarkable success. One need only look to Kaiser, which arguably has the most successful PHR out there today that now serves some 30% of Kaiser members.
Now if we can replicate the Kaiser model nationally (yes, I know there are HUGE Challenges to this) 30% of 240 million is a very large number of users.
Stay tuned, this is going to get interesting and hopefully companies such as yours will be able to develop new and innovative apps sitting atop these platform plays that will deliver value to those 80 million plus Americans in the future.
As a kidney transplant patient, who needs regular check-ups and a future that is bound to be full of complications. At 24, I’m mobile with various doctors across Europe. Having my health records online is something that I’ve long hoped for (I even resorted to throwing it all on my own website, behind a password!). I have accounts with both Google and Microsoft’s efforts, and just hope that it takes off. That said, I’m no-doubt in the minority. People who only ever go to the doctor when they are pregnant or with a cold, isn’t going to benefit hugely from this, and I am admittedly a bit of a geek! I think the main issue is probably going to get providers to push the data to Goolge or Microsoft. I really don’t see the UK’s NHS being terribly cooperative as the mentality is strikingly possessive about “their” data rather than the patient, or for that matter the fragmented systems in France. I, and those with long term conditions, can but hope!
You write “However, I struggle to see how it’s creating value for the average health consumer.”
I agree that sites like Google will most likely struggle to create value for the “average” health consumer.
But are we talking about the “average” health consumer or an almost infinite number of health consumer segments?
The demographic characteristic binding each of these consumer segments together is a shared disease or health problem.
So, rather than average health consumers, we have people with type 1 diabetes, type 2 diabetes, HIV etc. aggregating into segments online.
Will they take the time to enter data? I think in the case of a lot of chronic diseases, that require monitoring over a long time period,they may well do.
Let’s look at diabetes. There are already a number of specialist sites devoted to capturing blood glucose readings, along with food intake and providing graphs.
What these sites don’t have is the mix of disease – specific Google Scholar, and news aggregated alongside your health record. This becomes a powerful tool, esp alongside the ability to create various blogs, and use various widgets to create disease specific mashups.
Now imagine all those other “communities of chronic illness” out there.
I suspect that what these EMR’s provide is a starting point for a whole new way of
These communities already exist among many disease groups. Allowing people with few technical skills to do a little more (eg draw and graphs from numerical data) has just become a little easier with these new entrants.
I think a more interesting question is this:
Do these consumer EHR’s make much of the handwringing about corporate EHRs obsolete? WHat if large numbers of people start putting their health information online, and choose to share it?
For example, what if you were to post all your information using a pseudonym, and use this as your real health record – but only revealing your real details to trusted sources?
Interesting times. Interesting mashups ahead.