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Smashing Myths & Assumptions: PHR for Urban Diabetes Care

by John Moore | November 12, 2010

There remains an unhealthy level of skepticism in the market as to whether or not consumers will use a personal health record (PHR). While a certain level of skepticism is healthy in any market, the level to which it is laid towards PHRs is unwarranted and likely more a function of ignorance then malicious intent. Following is a brief PHR case study that provides validity to the mantra that a patient who is provided access to their personal health information (PHI) via a PHR can become a more engaged patient in self-managing their health. What is particularly striking about this story is that it is does not take place in middle-class America, where many have targeted their PHR initiatives, but rather among the urban poor.

Yesterday, I met with Dr. Nunlee-Bland, Director of  Howard University Hospital’s (HUH) Diabetes Treatment Center, who graciously provided the context and content for this remarkable story.

Empowering the Urban Poor to Self-Manage Their Diabetes:
In 2008, HUH received a grant from the Dept of Health, DC to launch a diabetes treatment program primarily targeting urban poor. As part of this grant, HUH launched a PHR initiative creating a patient portal using NoMoreClipboard (NMC), linking NMC to their clinical diabetes EHR, CliniPro from NuMedics. The PHR provides patients with access to their problem list, vitals (height, weight, blood pressure, BMI), medication lists, basic lab results, A1C results (can be charted for track and trend) and basic demographic information. While Dr. Nunlee-Bland stated that HUH has no reason not to provide patients with full access to all PHI, they have purposely kept the PHR simple and focused on the treatment of diabetes.

The PHR is available to all 1,000 patients currently enrolled in HUH’s Diabetes Treatment Center. Of that population, roughly one third are elderly, receiving Medicare, another third have commercial insurance from their employer and the final third are on Medicaid. Patients are introduced to the PHR during an appointment with a clinician encouraging patients to use the PHR to assist them in self–managing their diabetes. Today, 26% of patients are using the PHR and an additional 1% of the total diabetes patient pool are enrolling in the PHR on a monthly basis. In a market where PHR adoption sits at ~7%, 26% adoption is remarkable, especially when one considers that this is the urban poor we are talking about.

Assumption: Urban poor do not have computers so an online PHR is of no use.
In reality, HUH’s own survey has found that 70% of all patients have a computer. The number one reason patients cite for not signing up for the PHR is lack of internet access. Computer is not the issue, access is. (As a footnote, privacy was one of the least concerns with only 5% stating it was an issue.)

Digging deeper into those adoption numbers an even more revealing and stunning finding comes forth. While diabetes patients are evenly split across Medicare, Medicaid and commercial insurance, adoption and use of the PHR is not. The highest adoption and use of the PHR is among Medicaid patients, who make up a whopping 87% of all diabetic patients at HUH using the PHR. Why the strong adoption among this sub-group? Fragmented care. Dr. Nunlee-Bland explained that Medicaid patients must move from one provider or clinic to another to receive treatment – there is no consistency for this group as to where they receive their care and the PHR provides this group a “medical home” for their PHI which they value.

Assumption: The poorest are least likely to use the PHR.
Medicaid patients are at the forefront of dealing with a fragmented healthcare system, they are the most vulnerable but also the most willing to take action to gain some control over their treatment and empower themselves with access to their PHI. Young Medicaid patients are even going a step further, through personalization, e.g. uploading their picture to the PHR.

While the program is less than two years old, HUH is already seeing results. Prior to launching this project, the average A1C levels for patients was 8.8. Today, that number is at 7.6 (~14% drop) and is continuing to trend downward. Dr Nunlee-Bland attributes this to the patients having access tot heir PHI, particularly the ability to see trending data in the PHR. This information provides the patient the ability to visualize their progress. HUH has also seen a decrease in ER visits by patients using the PHR.

Myth: PHRs offer little clinical value.
Most patient portals/PHRs that healthcare organizations have put in place are run by the marketing department to promote patient retention. The idea that a patient portal could be far more than that, e.g. a clinically useful tool to improve patient outcomes, is something that exceedingly few healthcare organizations have embraced.

In May 2010, HUH began offering some mHealth capabilities to the PHR. Available for those who use a smartphone, the mHealth App provides alerts to upload glucose readings directly from their smartphone as well as provide periodic reminders to say have their eyes checked, get their A1C labs done, etc. Currently, there are 34 patients using the mHealth App, all of them young, Medicaid patients. Though launched just a few months ago, early results are promising with those using the mHealth App even more engaged (more self-reported glucose readings) in managing their diabetes (A1C values trending downward faster) than those using just the Web-based PHR.

Lessons Learned:
Dr. Nunlee-Bland stated that there are three key requirements to make such a program actually work in the field. They are:

1) Leadership: The provider/sponsor has to truly believe in the program and through that belief, bring others on-board. Without strong leadership coming from the very top of the organization, such a program will falter. Even today, one of the biggest challenges HUH faces is getting primary care physicians (PCP) outside of HUH to believe in and use the PHR as a significant number of patients who have not signed up for the PHR state that they see no value in it if their PCP sees no value.

A primary objection that PCPs have cited is that the PHR does not readily flag what is patient-entered data versus that from HUH. This is a problem that HUH and NMC are working on together to address.

2) Focus on ease of use: The PHR is pre-populated with data from the EHR and data from office visits, including updated notes, labs, etc. are automatically, nearly simultaneously loaded into PHR as well, minimizing any manual entry by the patient. While HUH encourages patients to enter their glucose readings directly into their PHR between visits, the data entry process is manual and adoption of this process is almost non-existant. However, the recent introduction of the mHealth App has shown a marked increase in patient entry of glucose readings as it is a far simpler process and is readily at hand in the form of their smartphone, which is always with them.

3) Be patient, this take s time: Installing and going live with the PHR is just the beginning. Significant training, which always takes time, of both patients and clinicians is required to drive adoption and use.

Closing:
With the coming changes in healthcare payment models looming just around the corner, changes that will require a higher level of risk-sharing by healthcare institutions who will be paid based on how well they manage patient populations, healthcare executives would be wise to go back and rethink their patient engagement strategies. In the not so distant future, successful healthcare institutions will not look at their patient portal strategies as simply another checkbox they need to address to meet meaningful use requirements, nor will they see it as just a marketing program, rather they will use such capabilities to engage patients as an active and engaged member of the care team that, as in the case of HUH, will lead to higher patient compliance and ultimately lower patient healthcare costs. And do keep in mind that any assumptions one may have as to who will be most engaged in using such tools should be left at the door.

Thank you Dr. Nunlee-Bland for opening this analyst’s eyes and erasing a few assumptions of my own. Also, note that Dr. Numlee-Bland will be on one of the late morning panel at the forthcoming HHS-FTC sponsored PHR Roundtable event on December 3rd.

21 responses to “Smashing Myths & Assumptions: PHR for Urban Diabetes Care”

  1. Studies like these are good. The more of them done, the more it’ll show that there is some sort of value to PHRs (and all of their derivatives).

    The thing is, the “customer” acquisition costs aren’t really studied. Building (and feeding) a PHR costs something. Studies sort of “force” a customer into using a product. What kind of money was spent in getting people to use the product? And do the cost-savings/revenue make acquiring and training patients worth it?

    And what’s the bottom-line for the hospital? Are they getting better medicare/caid reimbursements because of quality? Saving money with readmission costs? Public Health is a marvelous thing, indeed, but entrepreneurs are unlikely to build things if their customers aren’t willing to pay or if payers/providers aren’t saving/making money with solutions.

  2. Excellent post and thanks to @tedeytan for tweeting the link

    While I am not at all surprised by this report and case, it is certainly welcomed good news and confirmation of let’s call it contrary assumptions. David Bernick makes a good point, however– as one of those entrepreneurs who has invested heavily in related systems, and announced a platform in May with a companion diabetes use case scenario
    ( http://www.kyield.com/images/Kyield_Diabetes_Use_Case_Scenario.pdf ), I can attest to the challenge.

    For example, I did not attend the mHealth summit largely in protest due to a requirement that tech submissions would be free of charge–not a wise policy if we actually want to see innovation other than just from government and foundations (which are according to my observations increasingly fee based anyway).

    We have many challenges currently, not least of which is that non-profits, payers, and providers are all deciding that they need to become software developers and platform providers, regardless of strategic sensemaking (did I forget athletic shoe makers, media celebrities, and governments…).

    When governments, payers and providers enter this market–as we’ve seen lately, it may well be invisible, but innovation suffers–we’ll see many applications of course, but that isn’t the challenge– the challenge is that we have a systemic challenge requiring a systemic solution, meaning disruption to some.

    It’s difficult to tell if the hype and announcements individually represent confusion, ignorance, defense, offense, or some combination thereof, but I am aware of the impact it’s having on the marketplace, economy, and innovation.

    We need new ecosystems to rise. Thanks for the work.

    Mark Montgomery
    Founder & CEO
    Kyield

  3. […] Article John Moore, Chilmark Research, 12 November 2010 […]

  4. […] among the urban poor – something most observers considered unlikely. It’s aptly titled Smashing Myths & Assumptions: PHR for Urban Diabetes Care. Give that man an Emmy, or something. Comment Print  Email This Post Share and […]

  5. rvaughnmd says:

    Thanks for the article – found via the Keith Boone Daily. I think the analysis and recommendations are on the mark. Our organizational culture is very slowly shifting in this direction and we clearly need to move faster. Showing that PHRs can improve outcomes is a very powerful supporting argument for the resources needed to achieve adoption on both the physician and patient side.

  6. John Moore says:

    First off, thanks everyone for your comments. Now I’ll try to address some of them.

    David, you asked what might be the business model/value to a provider to have such a program and does it exceed costs? In the case of diabetes various studies have shown that a patient in compliance costs about $1.5k/yr, a patient out of compliance costs $20k/yr. If we move to risk-sharing payment models eg ACO & PCMH and a provider is paid say $5k/yr/diabetic patient to care for that patient then there is value. In the HUH example, they have 260 patients now using the PHR. Assume those 260 are in compliance, costing $1.5k/yr/patient and we get a return of over $750K/yr to the hospital. This will more than cover the cost of the software, training and education.

    Mark, all the stakeholders you mentioned have always played a role in the development of various tools and systems to try and improve their margins by lowering medical loss ratios or addressing inefficiencies in the delivery of care. For better or worse, this will not change. What I encourage developers to do is to find those within the “system” who realize that systemic change is needed, leveraging their knowledge to create new systems, new approaches to care delivery. The challenge will be that there are many stakeholders (the majority) that make a lot of money in this current dysfunctional system and will fight any changes.

    rvaughnmd, Based on your signature, assume you are a doctor. THanks for chiming in and glad to hear that there is movement in this direction, albeit slow. My personal hope/mission is that by exposing stories such as this, doctors and healthcare administrators will see that there is value, that there is an opportunity for them to improve outcomes and is that not what they are in the business for?

    • “If we move to risk-sharing payment models eg ACO & PCMH and a provider is paid say $5k/yr/diabetic patient to care for that patient then there is value.”

      I guess this is more my point/question. The “if” factor. IF we move to a risk-sharing payment model…

      When you’re an entrepreneur and trying to exist and figure out business models, it’s hard to commit your innovation to a payment system that’s an “if”. So I think entrepreneurs are circling around, trying to figure out the business value and so far alot of it is, “if this reform happens, then…”. It’s hard to convince investors to give entrepreneurs money when the business model relies on some reforms MAYBE taking place.

  7. Well John,

    My experience demonstrates clearly–with almost no exception, that when industries become this entrenched and dysfunctional from an economic perspective, stake holders simply are unable to reform and new ecosystems must rise– a classic case calling for creative destruction if ever one existed.

    So while your advice is common, and likely wise for many, I do not believe that such a strategy will lead to a sustainable health care ecosystem in the U.S.

    MM

  8. […] is also a great companion to the excellent post and review about the use of Personal Health Records in Washington, DC, by John Mo…. I have written a lot on this blog ( a lot ) about the potential of personal health records for […]

  9. John –

    Thanks so much for sharing these outstanding insights. I’ve come back to this post several times now and the part that consistently pops out is:

    “Medicaid patients are at the forefront of dealing with a fragmented healthcare system, they are the most vulnerable but also the most willing to take action to gain some control over their treatment and empower themselves with access to their PHI. Young Medicaid patients are even going a step further, through personalization, e.g. uploading their picture to the PHR.”

    Empowerment and personalization seem to be constant themes in programs that work from the user side. It’s outstanding that HUH has a measurable change in a key metric like A1C. This program definitely is worth watching closely.

    -Carol

  10. frank ille says:

    This is very encouraging as we have heard many times that the majority of the underserved do not have PCs and internet access.

    Incorporating mHealth is critical for patients to stay compliant and use the tools on a consistant basis.

    We must get primary care physicians to start asking patients to use these tools as part of their daily treatment regimen.

    Equally important is getting the EHR vendors such as EPIC and Centricity to provide APIs that allow third party PHRs to pass patient data into a single patient record.

    The DiabetesPHR team at HealthSaaS is commited to helping patients, caregivers, providers, HIEs, and payors to improve efficacy and lower costs.

    In December DiabetesPHR will be offering mobile applications that connect to our PHR and Microsoft HealthVault.

    http://www.diabetesphr.com

    http://www.healthsaas.net

  11. There are some problems with this scenario.

    Washington, D.C. is the most web-connected city in the U.S., so internet access is not necessarily an issue.

    An average hospital in-patient is taking 12 different medications, and outpatient compliance does not exceed 40%. This is the same for the chronically ill or elderly patients that are outpatient. 60% of the patients seen at the Emergency Department at Washington Hospital Center still have no health insurance, have a 6th grade reading level, and are using it as primary care provider.

    Yes, I agree that if you provide direct contact and really pester patients with continuing follow-up care, then remarkable results can be achieved. But these data have been known from the published literature for years. There is nothing novel there – but who is going to pay for this? I suggest that you consult data from the National Quality Care Assurance web site (ncqa.com).

    It’s like you are re-inventing the story of aftercare all over again. It has little to do with the Personal Health Record.

  12. […] 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 […]

  13. […] 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 […]

  14. […] a personal health record” – a function more of ignorance than malicious intent. They reported on the experience of a program developed by Howard University Hospital’s Diabetes Centre […]

  15. […] November John Moore at Chilmark Research posted Smashing Myths & Assumptions: PHR for Urban Diabetes Care, which documented that for the urban poor, their handheld is sometimes their “medical […]

  16. […] November John Moore at Chilmark Research posted Smashing Myths & Assumptions: PHR for Urban Diabetes Care, which documented that for the urban poor, their handheld is sometimes their “medical home.” […]

  17. […] November John Moore at Chilmark Research posted Smashing Myths Assumptions: PHR for Urban Diabetes Care, which documented that for the urban poor, their handheld is sometimes their “medical home.” […]

  18. […] Chilmark Research post on mobile PHR for the urban poor: Smashing Myths and Assumptions […]

  19. […] Such was the case in an urban, predominantly poor neighborhood in Washington D.C. wherein diabetic patients actively engaged in the use of an App to record their glucose readings for they were getting feedback from […]

  20. […] has been debunked that patients of all types won’t get engaged in their health whether it’s low income diabetes patients, native American populations or the elderly. However, providers are largely failing in their […]

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