When Chilmark Research was founded, the primary area of focus was healthcare IT that was consumer facing, consumer enabling – tools that would help consumers better manage their health and the health of loved ones. This led to our first major study on Personal Health Records (PHRs) published in May 2008. But alas, I was idealistic in the belief that there was enough interest in this area, enough of a market to sustain and grow this young company. Sure, there are loads of small companies trying to make a consumer health play and there is certainly plenty of hype surrounding it but at the end of the day when one takes a close look at this market one finds a multitude of small companies struggling to break through. Exceedingly few companies have been able to really capture the consumer market potential and scale to a size that would support the kinds of services that Chilmark Research offers. This led to a rethinking of what Chilmark Research would focus upon.
Stepping back and looking at the market one sees several critical technical gaps:
- Lack of Data: Despite all of the incredible medical advances taking place and the amazing technologies that are being used today to practice medicine, the industry as a whole is a laggard in adoption of IT. One can point the finger in many directions but the bottom line is that there is simply not a lot of clinical, personal health information (PHI) in a readily computable digital format that a consumer can tap into.
- Data Liquidity: A consumer’s PHI, even when it is in digital form is most often scattered across a multitude of silo’d applications making it virtually impossible for a consumer to readily and securely access and manage their complete health records using the data contained therein to personally guide them to make better health decisions. There are a number of contributing factors at play here, primary among them lack of clear standards & terminology as well as reluctance of healthcare organizations to release data to the consumer.
- Ease of Access: Providing the consumer with “on-the-go” access to their health information allowing them to easily call up or input data to their personal health system, via a mobile device. Today, most mHealth apps in this category are rudimentary and it is not necessarily the fault of the app developer but often the lack of good data as a result of points 1 & 2.
Effectively combining the above can lead to “actionable knowledge,” the ability of a consumer to make informed decisions regarding their health, or that of a loved one, at the point of need – when it matters most. Now whether or not consumers actually use such technology remains to be seen. Yes, according to Pew Charitable Trust over 80% of consumers have used the Internet to search on a health topic but it is one thing to do a search on say a symptom and quite another to actively manage your health. There are examples of deep consumer engagement, such as the one we profiled at Howard University, but these remain more the exception than the rule.
Addressing the three critical gaps above will take time and it will begin within healthcare organizations of all sizes. It is for this reason that Chilmark Research re-directed its research to have a primary focus on technology adoption among providers. (Note: We will continue to address other areas such as employer views of health & wellness initiatives, consumer adoption, etc., it just will not be primary to our research). This new focus has resulted in two recent reports: mHealth in the Enterprise and HIE Market Report. Over the course of the coming year Chilmark will continue its focus on these two critical areas for ultimately they will lead back to addressing the critical gaps mentioned above.
Circling back to the title of this post, despite our rather pessimistic view of consumer adoption of health and wellness applications we are encouraged by a couple of recent initiatives.
First is the Blue Button initiative that was developed by the VA and CMS. This simple concept allows one to easily download their records has received the support of a number of organizations including both Google Health and Microsoft’s HealthVault. Now if one were to apply the Blue Button to State HIE initiatives a consumer could theoretically be able to aggregate their full longitudinal record from all the hospitals and physicians they may have seen in their region, their State, download it via a State HIE’s Blue Button to their desktop, their PHR, their Google Health or HealthVault account.
Second is the Direct Project. Unlike its predecessor, NHIN CONNECT, the Direct Project was from the outset charged to do one simple thing, replace the ubiquitous fax machine in physicians’ offices by providing a secure means for physicians to share clinical information via the Internet. Nothing fancy, nothing slick, just simple, secure email combined with a physician directory service. While this is fairly simple, what is exceedingly cool and potentially quite powerful is a featured now built into Microsoft’s HealthVault wherein a HealthVault user gets a secure assigned email address that they can share with their doctor. When that doctor goes to use Direct Project to send records to another physician as part of a referral process, he can also cc the patient and the records will also be sent to the consumer’s HealthVault account. Beth Israel Deaconess’s CIO John Halamka has already implemented this at his institution and we look forward to the day when this will become common practice across the healthcare sector.
Both of these initiatives have been released in the last six months but their broader adoption across the healthcare sector is not assured. It is our hope that future Meaningful Use requirements that are released for Stages 2 & 3 encourage physicians and healthcare organizations to adopt and use both the Blue Button and Direct Project in their day-to-day practice to ultimately make the consumer a more active participant in their health. This could indeed finally bring us to the cusp of a groundswell in consumer adoption and use of more advanced tools to better self-manage their health and the health of those they hold dear.
I could not agree more. As a practicing family physician and committed leader on our regional HIE development, changing patient behavior and their commitment to better health is the only way we can successfully alter the course of medical care in our country toward a sustainable model. Research indicates that personal longevity is based 40% on lifestyle choices and only 10% on medical care received; patient’s must make healthier choices if the availability of excellent medical care in our communities is to remain. Our systems’ are seeing financial constraints, medical supply limitations, and most importantly professional shortages unable to cope with the ever increasing demands. Consumerism under proper education can help to achieve higher valued outcomes. Hopefully our efforts will bear that out in our community over the next few years of ongoing efforts toward a healthier medical system that fosters a healthier community.
John,
Thank you for the thoughtful piece. It is the same road Ringful has traveled. We started with goals to change consumer behavior through “data analytics”, but
1. Most people give lip service to it. Few people want to pay for it.
And
2. There is really no evidence that a better informed patient engages in more healthy behaviors. If a person is not adherent to life saving medications, he would not be adherent to any data reporting apps.
So far, like you, we found success in the hospital world as opposed to consumer world. Our new initiatives are much less ambious — we are no longer looking to change behavior for everyone, but for selected patient groups that are important to the healthcare providers: I think your report on Howard and a study in Good Samaritan hospital are encouraging indicators of this new direction.
Cheers
Michael Yuan, Ringful Health
Cheers
Michael
Thank you Dr. Willis for your input. It is always heartening to hear from those on the front lines of delivering care, especially primary care physicians. I have seen the same stats as you quoted and indeed, much like this country needs to take greater fiscal responsibility to insure that our children’s future is not one burdened with debt, we also need to take greater personal responsibility for our health. The current trajectory is unsustainable. But engaging the consumer to make healthy decisions is the challenge. Hopefully, providing them truly useful and personal tools which leverage their PHI in conjunction with close clinician assistance and guidance will help them make better, healthy decisions and likewise help us all to turn the corner.
Great to hear from you Michael. Sounds like we are both on the same road together, trying to help the consumer be more empowered to make healthy decisions but we both have run into the same hurdles. I’m not quite as pessimistic as what I have seen done at KP and Geisinger for the general population are pretty remarkable. But I do agree with your statement that the most promising near term opportunities are those that focus on select patient groups with specific chronic diseases that need a higher level of engagement. This will likely accelerate as HCOs must take on a higher proportion of risk in future ACO bundled payment models.
John
John…
I think you are on target with: “Effectively combining the above (the three critical gaps) can lead to “actionable knowledge,” the ability of a consumer to make informed decisions regarding their health, or that of a loved one, at the point of need – when it matters most.”
I would argue that the “elephant in the room” is the way medicine is defined in our nation. Medicine has been defined within a biomedical model since the Flexner report back around 1905 as defined by physicians. Our profession of medicine, as the epitome of a profession, is an occupation which has assumed a dominant position in a division of labor, has gained full control over the determination of the substance of its own work.
The profession claims to be the most reliable authority on the nature of the reality it deals with. It deals with the problems people bring to the profession, develops its own independent conception of those problems and tries to manage both the clients and the problems in its own way.
Medicine is not merely one of the major professions of our time; it alone has developed a systematic connection with science and technology. Unlike any other profession, medicine has developed into a very complex division of labor, organizing an increasingly large number of technical and service workers around its central task of diagnosing and treating the ills of mankind.
AND… one must not forget that the physician is the preeminent practitioner of medicine, and represents it par excellence. One must also remember that Biomedicine is the “particular” medicine that the Western world has invented and, as a cultural system, focuses on physicians, its preeminent practitioners.
Where does this argument take us?
People don’t really have the information to make informed decisions! People have to go to a physician for all of it! I would argue that’s why the paucity of reliable information that you mention.
I was not good in mathematics (actually these dropped my GPA.. LOL) and I became a physician… who now interprets for the most astute engineer, that sends spaceships to explore the universe, his/her children immunization scheme or else they are not immunize! This is the perfect monopoly of knowledge by the medical profession!
Now.. to chastise the public for not taking responsibility (as the free market ideologues would do) is unfair to say the least and it is a perfect example of blaming the victim.
I would argue that it will not be until WE as society decide that access to health care is a societal good rather than a consuming good that we will not have the right information to make informed decisions!
Sorry for the long dissertation!
Angel
Soon there will be available an interoperable, mobile, webapp PHR that is affortable, east-to-use, secure, private and functional anywhere anytime that will require one tap to access vital data at or BEFORE point of care. Projected end users 15 million by years end.
Don’t give up on the PHR yet….