Problem Addressed

• A common, serious chronic condition: Diabetes is a condition where the body does not produce or use insulin properly, leading to a buildup of sugar in the blood. Diabetes affects an estimated 24 million Americans and often leads to complications, including blindness, kidney damage, heart disease, stroke, lower-limb amputations, and even death. Diabetes is the seventh leading cause of death in the United States.¹
• Higher rates among African Americans and low-income individuals: African Americans are twice as likely to have diabetes as non-Hispanic Whites and more likely to suffer complications such as end-stage renal disease or lower-extremity amputation.² Low-income populations with less access to consistent health care, healthy foods, and affordable exercise options also suffer disproportionately from diabetes and diabetes-related complications. In the District of Columbia (a city with a high proportion of low-income African Americans), 8.2 percent of residents had diabetes in 2004 (tying with South Carolina and Louisiana for sixth highest rate in the nation). Prevalence reached as high as 23 percent in some African-American communities within the city, including those served by Howard University Hospital and its diabetes treatment center. Nearly 80 percent of African-American residents with diabetes reported being in poor health,³ and diabetes-related death rates in the city ranked third in the nation.⁴
• Unrealized potential of ongoing monitoring and self-management: Despite strong evidence that close clinical monitoring of key indicators and self-management can prevent complications, only 23 percent of people with diabetes have their blood glucose levels checked annually, and only 44 percent monitor their blood sugar daily.¹ Lack of adequate insurance exacerbates this problem, as Medicaid recipients and the uninsured are less likely than Medicare beneficiaries to receive comprehensive care.⁵ Activated, engaged patients tend to do a better job of self-managing their diabetes,⁶ but many patients (especially low-income individuals) do not have the time, knowledge, and/or financial resources to be actively engaged in their own health and health care.

Description of the Innovative Activity

• Identification of interested patients: Staff survey patients to gauge their interest in using the free PHR to enhance their diabetes care. This survey probes their knowledge of PHRs, their interest and/or concerns about participating in the program, and whether they have access to a computer and the Internet. To date, more than 25 percent of surveyed patients (270 out of roughly 1,000) have enrolled in the program; most who did not enroll lacked access to the Internet or a computer. The average age of those participating is 50, with the youngest being an adolescent and the oldest an 87 year old.
• Enrollment and setup: Staff help interested patients set up the PHR and a free premium membership in No More Clipboards, an online PHR application. Once the patient gives permission, pertinent information from the clinic's EMR—including standard diabetes parameters such as blood glucose, blood pressure, kidney function, cholesterol levels, and weight—is downloaded to the newly created PHR.
• Initial and ongoing training and support: The staff person who sets up the PHR trains the patient on its use, including how to enter clinical information. Patients also receive written materials with text and graphics (including how to retrieve their user name and password via e-mail) and refrigerator magnets with the Web site URL and information on how to obtain technical support. Staff query patients during return visits about their PHR use and provide refresher training if needed.
• Anytime access to—and ability to enter—information on key indicators: Patients can log into their PHR at any time via a personal computer with Internet access. They can view a history of their blood glucose, blood pressure, weight, cholesterol, kidney function, and other key clinical indicators that can help them better manage their diabetes. They can also enter current data from home monitoring systems, such as a glucometer, scale, and/or blood pressure cuff. Patients with smart phones can enter this information through the phone, with the data going into both the PHR and EMR. (To date, 50 patients have taken advantage of this function.) Patients can also receive text or e-mail reminders to check their blood sugar or log on to the PHR to pick up a message from their clinician.
• Clinician use of data during visits: Clinicians actively use the data in the PHR during office visits, even if the visits take place in the clinic's mobile van (which has access to the EMR system). Using established guidelines for integrating such information into the office visit, clinicians review progress and trends in both patient-entered data and laboratory values.
• Secure messaging between visits: Between visits, clinicians can send notes to patients securely via the PHR. Clinicians typically use this function to share additional information, encourage greater self-management (including more regular entry of data into the PHR), and congratulate patients on improved diabetes control.
• Data sharing: Patients can authorize other individuals or organizations to access data in the PHR, including the following:
  • Other providers: Patients can print out or authorize online access for other providers (e.g., specialists, emergency departments) to view their medical history, including medication list, problem list, and recent laboratory results. This information helps these providers obtain a more complete picture of the patient's health, and it saves patients from having to remember and repeat their medical history at each visit. At present, roughly 10 percent of patients share information with a clinician outside of the diabetes treatment center.
  • Family members and caregivers: Patients can share information from the PHR with family members and caregivers.

References/Related Articles

Contact the Innovator

Innovator Disclosures

Results

• Enhanced engagement: About one-third of participants regularly check trends in their blood glucose, cholesterol, weight, blood pressure, and kidney function. Participants seem to be more aware of changes in these levels and more likely to consult their clinician when indicators worsen. Roughly 10 to 15 percent of all participants (and 90 percent of cell phone application users) regularly enter their blood sugar levels into the PHR; previously, these patients did not record and/or report results to their clinicians. (Higher use by cell phone users likely can be explained by the greater convenience of entering data in this manner.)
• High participation among Medicaid enrollees: Although patients with all types of insurance use the program, Medicaid beneficiaries use it more than those with Medicare or commercial insurance. Medicaid beneficiaries are more likely to enter blood glucose data and to provide additional information, such as contact information for their pharmacy and other providers. (All patients using the cell phone application are enrolled in Medicaid.) Clinicians involved in the program hypothesize that the fragmented care experienced by most Medicaid beneficiaries (who frequently have to switch managed care plans and/or providers) makes them more interested in keeping their own medical records.
• Improved blood glucose control: Patients enrolled in the program experienced a statistically significant drop in hemoglobin A1c levels, which fell by 0.9 points or roughly 13 percent. By comparison, those who did not enroll experienced a slight increase over the same time period. Each 1-point drop can reduce risk of eye, kidney, and nerve complications by as much as 40 percent.¹

Evidence Rating (What is this?)

Context of the Innovation

Planning and Development Process

• Application for department of health grant: The diabetes treatment center applied for and received a grant from the District of Columbia Department of Health to develop PHRs that could improve diabetes outcomes for District residents.
• Investigation of software options: Staff investigated different software vendors, choosing NoMoreClipboard because their system integrated with the existing EMR, thus allowing implementation with minimal staff and clinician time and without the need for patients to enter data from the EMR. Program staff believe this choice has increased program participation and effectiveness.
• Staff training: Clinicians and other staff received general training in the PHR application through a Webinar conducted by NoMoreClipboard. One physician and one staff person received "super user" training from the company, and they provide ongoing support to other physicians and staff members.
• Addition of cell phone option: The center used another department of health grant to develop and launch the smart phone PHR application beginning in April 2010.

Resources Used and Skills Needed

• Staffing: A dedicated staff member enrolls, trains, and supports patients in using the PHR. This individual need not have an advanced degree but should be generally familiar with diabetes care and computers and should receive training on the PHR interface and how it can enhance diabetes monitoring.
• Costs: Upfront development costs totaled roughly $10,000 to integrate the PHR system with the existing EMR. Ongoing program costs include salary and benefits for the dedicated staff person ($45,000 to $50,000 a year) and the cost of providing premium accounts for enrolled patients (roughly $1,250 a year). (The program received a discounted rate of $5 each for 250 premium accounts.)

Funding Sources

Tools and Other Resources

Getting Started with This Innovation

• Give patients ample training and support: Patients will be more likely to use the PHR if they feel comfortable with it. To encourage such use, dedicate a staff member to providing patients with initial training and ongoing support. (Physicians and other clinical staff do not have time to play this role effectively.)
• Anticipate and address barriers to use: Seemingly small barriers can prevent widespread use of the system. To the extent possible, program developers need to anticipate and address such barriers. For example, staff added a mechanism by which patients could easily retrieve their passwords, thus increasing participation and reducing the number of support calls.

Sustaining This Innovation

• Track program benefits: Ongoing tracking and sharing of program benefits (e.g., improved laboratory values, fewer complications and emergency department visits) helps to demonstrate the value of the program to both clinicians and patients.
• Seek ongoing funding from stakeholders that benefit: Once benefits have been identified, determine whether those benefits lead to cost savings for particular stakeholders, such as hospitals, insurers, physicians, and/or patients. Those stakeholders that benefit may be willing to provide ongoing financial support to the program, thus creating a sustainable business model.
• Encourage clinicians to use data during patient visits: Clinicians at the diabetes treatment center follow American Diabetes Association Education program guidelines for integrating data from the PHR into patient visits. This process reinforces the importance of the information and hence increases patient participation and engagement.
• Educate community-based providers on value of data: Many patients report that their other doctors in the community do not seem interested in PHR data. As noted, roughly 10 percent of participating patients share the information with their other providers, but another 10 percent offered access only to find that these providers did not want to participate. These clinicians either do not trust the data and/or prefer to capture their own information. Educating them about the usefulness and validity of PHR data may help reverse this trend.