Web-Based Personal Health Record for Low- and Moderate-Income People Has a Positive Test
Staff at One Economy Corp. in Washington, D.C., developed an Internet-based personal health record for use by a low- and moderate-income population and tested its feasibility.
Personal health records allow patients to gather medical data from doctors, clinics, hospitals, pharmacies and insurers together in one place. At the time of the project, no one had integrated personal health records into other services available to the working poor.
- One Economy staff developed a tailored personal health record and launched it on a restricted area of the Beehive, a Web site designed to help low- and moderate-income people improve their standard of living. The content was written in English and Spanish at a fifth-grade literacy level.
- The eight patients who tested the personal health record tool said they would continue to use it.
The Robert Wood Johnson Foundation (RWJF) supported this project with an unsolicited grant of $50,000 from October 2004 through September 2005.
In October 2001, One Economy Corp. launched the Beehive, a Web site in English and Spanish, to help low- and moderate-income people improve their standard of living by providing information about work, money, entrepreneurialism, health and fitness, home ownership, insurance and more. One Economy Corp. is a nonprofit organization based in Washington, D.C., that works to improve the access of low-income people to technology.
With 350,000 individuals using the Beehive every month, project staff recognized its potential for helping low-income people better manage their health. The user population often faces a daunting task of keeping track of medical data from many different clinics, doctors, hospitals, pharmacies and insurers.
Personal health records are a patient-controlled tool for collecting and updating health information. By contrast, the electronic health record is a provider-driven tool designed to replace the paper records traditionally maintained by physicians. At the time of this project, a diverse array of fee-based personal health records existed, but nothing had been integrated with other services available to low-income populations.
One Economy Corp. developed and tested an Internet-based personal health record tool focused on a low-income population.
After researching available tools, One Economy staff decided to develop a personal health record tool tailored to the needs of its target audience. That population had lower-than-average literacy and technological knowledge and needed a tool that was easy to read in both English and Spanish.
To collect feedback on the development and use of the personal health record, project staff established a partnership with Mary's Center for Maternal and Child Care, which provides care to Spanish-speaking families who have jobs where health insurance is not available. Health care professionals and Latino patients from Mary's Center participated in an advisory group.
One Economy staff provided separate training to patients and providers on the use of the personal health record before they were asked to test it. Some of the patients had Internet access in their homes, others had access at work and others used computers at Mary's Center.
As the One Economy staff reported to RWJF:
- Project staff developed a personal health record tailored to the needs of its audience and launched it on a restricted area of the Beehive Web site. The content is written in English and Spanish at a fifth-grade literacy level, which mirrors the other content on the Beehive site.
The personal health record tool had eight sections:
- Getting Started - Basic Information
- Doctor's Info
- Visits to the Doctor Insurance Info
- Shots and Immunizations
- Allergies, Illnesses and Conditions
- Diet and Exercise Log.
Patients also said they would tell their friends about the personal health record. One who had already done so said she liked it "because it's a bilingual site and easy for non-English speakers."
- Solicit the input of the people for whom you are designing a product. This was one of the first times that One Economy staff closely interacted with its intended audience. Its input proved invaluable in grounding the public health record in the real-world needs of its users. "Folks have their own lofty ideas about what can work until you have a reality check. You really have to talk to your users and find out what matters to them, what makes sense to them." (Grantee/Saunier)
- Decide on the key audience for a personal health record. Physicians generally wanted a more complex and detailed document for example, one that included an advanced directive, links to more health information and a fuller documentation of medical history. In contrast, patients emphasized ease of use as their greatest priority. Project staff ultimately decided that patients were the key users and their needs should drive the tool. (Grantee/Saunier)
- Respect patient concerns about privacy. Many members of the target group for this project have uncertain immigration status and are wary of official oversight and information sharing. This echoes the general privacy concerns expressed by American consumers about any type of electronic health record. To address this discomfort, project staff sought to build a stand-alone tool that did not require the help of a staff person. (Grantee Report to RWJF)
- Seek legal advice to ensure compliance with the Health Insurance Portability and Accountability Act (HIPAA). The confidentiality requirements of HIPAA, which governs the privacy of medical records, may make it difficult to scale up a personal health records project. This is likely to be a particular challenge if the records are stored on an Internet site. (Grantee/Saunier and Grantee Report to RWJF)
AFTER THE GRANT
The project ended with the grant. The personal health record section on www.thebeehive.org is no longer active.
GRANT DETAILS & CONTACT INFORMATION
Using Technology as a Tool to Connect People to Vital Information and Services
One Economy Corp. (Washington, DC)
Dates: October 2004 to September 2005
Report prepared by: Susan G. Parker
Reviewed by: Karyn Feiden
Reviewed by: Marian Bass
Program Officer: Albert O. Shar