PHRs are much like the tides, news about them ebbs and flows. Right now, with the relatively recent demise of Google Health, Dossia’s attempts at rebirth, and the significant inquiries we are receiving regarding meaningful use requirements to host a PHR (patient portal). But in and amongst all this Chilmark has heard on more than one occasion the following statement: “The problem with PHRs is that they are a technology in search of a market.”
This statement is simply wrong for the following reasons:
1) As we have said countless times before in previous posts, very few people are interested in a digital filing cabinet for their health records. Unfortunately, many PHRs in the market today are just that, digital filing cabinets. In this case it is not an issue of a technology in search of a market, it is just a bad product that really has no market.
2) Technology adoption does not occur for its own sake, it occurs when there is perceived value by the user that leads to adoption. PHRs, PHPs (personal health platforms), patient portals, etc., is certainly a technology, that when well-designed, and implemented can deliver significant value and subsequently see high adoption rates. Just look to Kaiser-Permanente’s instance of MyChart, where patient adoption is well over 40%. Up in the Pacific Northwest, the Group Health Collaborative (GHC) is seeing PHR adoption that is well over 50%. That’s a market!
While there is indeed a PHR market, the market is immature and likely to remain so for the foreseeable future. The market is unlikely to be found in stand-alone PHRs or PHPs where it is incumbent upon the end user to populate the system and establish the critical links with the broader healthcare system (borg) to drive those high-value transactions. Rather. the near-term market for PHRs will be with those systems that are tethered to a healthcare provider, be it an individual practice, a hospital or large IDN such as Kaiser or GHC that have the critical linkages for transactional processes such as appointment scheduling, Rx refill requests, email consults. etc.
Unfortunately, for those with complex conditions, who have a multitude of doctors and/or specialists, these patients will be burdened with having a multitude of PHRs (patient portals) to visit to view their records and when desired, invoke a transactional process. The dream of one complete longitudinal patient record will remain such, just a dream especially for those who are in greatest need of one such record, our sickest, most needy patients.
And one last point…
Why are organizations such as KP and GHC seeing such high rates of adoption while many other organizations do not? Quite simple really, these organizations have built these patient portals (PHR) and the tools they provide into the clinician workflow and actually have clinicians encourage patients to use the PHR. Most organizations we have spoken to have failed to grasp this critical point, and maybe they really do not care, they’re just checking off the meaningful use box of requirements that must be met.
John,
Excellent post with a very accurate description of the main challenges facing this crucial area of patient engagement.
Write more, please.
Regards,
David
John
Thanks so much for telling it as it is!! The sooner healthcare focuses on the real problems we have to solve the better. The issues we have are numerous:
1) We have a productivity issue – a rapidly aging population accompanied by a decreasing number of Healthcare workers.
2) We have an addictions, poor diet and sedentary lifestyle issue – increasingly wealthy and empowered citizens are developing more unhealthy lifestyles.
3) We have a self care support issue. An “epidemic” in chronic conditions particularly Type II Diabetes, Chronic Obstructive Pulmonary Disorder (COPD), Congestive Heart Failure (CHF), Coronary Artery Disease and Mental Illness, especially Depression with patients increasingly having more than one condition.
4) We have a fragmentation issue. Continued advancement in treatments that has led to greater medical specialisation and increased survival rates for many conditions that now mean they have the characteristics of chronic disease – for example HIV and many cancers. However, the greater medical specialization leads to a further increase in the fragmentation in healthcare delivery and an even greater co-ordination challenge.
Empowering patients and making them an integrated part of their care and wellness maintenance (read “prevention”) is THE common thread in addressing these 4 issues. Frightening patients does not work, by the way.
By giving patients the confidence that they can take control of their own health and that by doing things within their ability, they can actually make a real difference and improve their health, or reduce their risks of developing a disease, then they will actually do something. Supporting them as they self care within an overall care-plan – that works. Helping them with administrative tasks through self-service applications, that also helps. This is what PHRs should do.
Whilst ever PHRs are not focussing on putting the patient at the centre of an integrated healthcare team, they will fail. There are so many vested interests being threatened by this new model no wonder, they want to spread rumours of its demise!
More power to your keyboard, John!
Regards
David
I have been following your writings re PHRs for some time and appreciate your work and analysis.
Let me say a few things form the perspective of a physician, and one who has lectured on encouraging people to invest time and intellect in their health.
First, there is what I call the ‘Wall of Apathy’. People, alas, recklessly, dangerously, and wrongly, entrust their physicians with their healthcare and health facts. The Wall is very steep.
The Wall is steep because doctors like it that way and work to keep it that way.
What patients don’t know won’t kill them (‘them’ are the doctors).
Medicine is a closed society and the fundamental principle that a person’s health truths (labs, opinions, reports, etc..) are first the property of the person and second the property of providers has been negated and refuted at every turn by the healthcare profession and healthcare industry. Remember medical errors is the fifth leading cause of death so the last thing a doctor wants is a patient nosing around.
Both of these, the Wall of Apathy and the Closed Society explain why the PHR does nothing more than ‘crack’ the health truths door open a little and still keeps the patient out of the loop. PHRs are only a token, they provide little of the facts a person needs to know if their care is adequate and conforming to standards of care.
The whole notion of a PHR is a ridiculous attempt to share the person’s whole medical record pie. That is why there is no traction.
Healthcare delivery is created to be provider centric not patient centric and as such the record of a persons healthcare is created to be the same way.
Forget PHRs and get ‘crackin’ on opening up a persons entire record on a shared platform that is both provider and patient accessible and readable.
Being able to email your doctor and seeing an image of your labs does nothing to inform you of the fact that your prostate hasn’t been checked in three years and your last PSA, though in the ‘normal’ reference range is double the last one and possibly worrisome. Coding that is not difficult.
People would be horrified if their quarterly investment report was only a phone call from their broker’s assistant saying ‘everything is fine, let’s check in three months’ (no report, no on-line viewing, no quarterly calls), but are quite content to receive a call from their doctor’s secretary saying ‘the results of your blood work are fine’, and leave it at that.
How do you know that report she looked at was yours? It isn’t always.
Finally, medical reports reporting (what your doctor gets from labs, pathologists, radiologists, specialists etc.) is chaotic, non-standardized, and riddled with critical information buried deep inside that never sees the light of day, or the doctors or the patient’s eyes. Trust me on this.
One pathology report a patient I consulted on showed me a copy of a report their doctor received that had a big box checked ‘NORMAL’ and in the smallest font a sentence that said ‘Our criteria for normal is four malignant cells. This patient had three.’ The doctor looked at the box and missed the fine print. The patient read it, however.
Forget the notion of personal health records and rid ourselves of the notion that only SOME of my medical records are mine and some are my doctors. ALL my medical records are both personal, and mine.
After that, let’s get our IT heads together to work organizing the craziness in medical record reporting and dismantle the coveting of medical records by doctors and institutions and write smart systems that match diagnoses to standards of care and analyzes those records for errors of omission, trends, etc.
We can start with chronic diseases, like diabetes and others for which standards of medical care exist.
Let’s have a shared-care concept of care that shines the light of day on each person’s health truths.
All patients have that right.
Louis Siegel, M.D.
MD-CAREWARE, LLC
‘thinking software for patient care’
info@discoverdbx.com
How right you are. When doctors and nurses encourage patients to use the portal, patients do it. Lo and behold, as my father would say. I may need to start a company around the radical concept of encouragement.
Thank you, John, for this excellent summation of the main barriers to adoption of the standalone PHR. Looking back in time and thinking about how Internet has changed the structure of industries, the common denominator is this simple fact: the Web simplified the jobs people were doing using other methods. A PHR that is disconnected from the provider workflow is trying to solve a problem in a way that actually makes the job more difficult for everyone involved.
Broadly speaking, Americans are frustrated by the difficulty they have communicating, scheduling, and working with healthcare delivery organizations. One reason IDNs have been successful where non-integrated HDOs have failed is their recognition of this problem, and their ability to act on a belief that increasing patient access to administrative, financial, and clinical workflows will increase efficiency and increase quality. Now that these connections have been established, and their ROI measured, more HDOs will follow in spite of the failure of PHRs such as Google’s.
John, I first posted this response on The Health Care Blog — then realized that they had taken it from your site.
A personal health record (PHR) isn’t a portal and a portal isn’t a PHR. One is a medical record;the other an access point — perhaps to a PHR but not a requirement. Trying to equate them thoroughly confuses the discussion and leads to wrong conclusions and actions.
It’s wonderful that millions of Kaiser’s members access the Kaiser portal to schedule appointments, renew prescriptions and exchange e-mails with their doctors. But these interactions do nothing to inform care providers about a patient’s medical history, condition, care requirements, meds, etc. They do nothing to help providers avoid medical errors or unnecessary tests. And they do nothing to help providers coordinate a patient’s care. Those are just some of the things a properly designed PHR should do — and that a portal can’t do.
I agree that today’s PHRs don’t meet the needs of either doctors or patients but that doesn’t mean there is no need or market opportunity. It merely means that the wrong products are being offered. If you doubt this conclusion, just talk to patients and providers.
I also agree with you on another point. If providers aren’t involved with and don’t support a PHR, it will fail.
I believe there are four other requirements for acceptance, as well. One, is that it must be easy to use by both providers and patients. Second, it must integrated in the care process, not merely an “adjunct” to it. Third, it must meet the needs and requirements of patients, one of which is to not store their records on web servers accessible via the Internet. Fourth, it must be affordable and financially self-sustaining.
Hmm it appears like your blog ate my first comment (it was extremely long)
so I guess I’ll just sum it up what I submitted and say, I’m thoroughly enjoying your blog.
I too am an aspiring blog writer but I’m still new to everything. Do you have any tips for novice blog writers? I’d definitely appreciate it.