By JOHN MOORE

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.

Last week, 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.

John Moore is an IT Analyst at Chilmark Research, where this post was first published.