Fall 2006 Edition


November 21, 2006

Information technology (IT) has been seen as both a challenge and opportunity in facilitating better patient-provider communication, through supporting shared decision-making, and providing patients and providers with timely information about supporting health behavior change, all of which can lead to better health care. The tasks of shared decision making, goal setting, and health behavior change define the key elements of collaborative self-management support. Efficacy studies have demonstrated how waiting room kiosks, shared electronic medical records and web-based support groups can lead to better patient satisfaction and improved quality of care, through self-management support. However, the realities of implementing these systems in day-to-day practice can be daunting.

Quality Allies, a national demonstration project funded by the Robert Wood Johnson Foundation and the California Health Care Foundation was designed to develop and test innovations to understand and overcome specific barriers to the spread of collaborative self-management support and to demonstrate their generalizability in diverse health care settings.

During the first phase of Quality Allies, 20 teams participated in a 10-month long Learning Community where teams met in a group every 2 months to learn from expert faculty and from each other ways in which they could implement changes in how health care was delivered in ambulatory settings that is consistent with the principles of collaborative self-management support.

Several health care organizations participating in Quality Allies’ Learning Community decided to test implementing IT tools as a way to achieve better collaborative self-management support. These projects were designed and tested collaboratively by patients and their health care delivery team. Project directors asked the demonstration sites to address any of the following questions:

- What IT tools support patient/provider communication?
- How can the computer terminal in the exam room support rather than detract from collaborative care, enhance patient/provider interaction and help with motivation to manage long-term conditions?
- How can electronic tools for monitoring of clinical indicators support education and behavior change in patient self-management, and contribute to collaborative decision-making?
- Can IT tools help in medication and symptom monitoring?
- How can patient-owned medical records support self-management?
- How can information technology support timely feedback on improving quality in healthcare?
- Are there effective Internet based behavior change support groups?

Discussed below are some of the challenges faced and lessons learned by these teams.

I. Medical College of Georgia (MCG): Patient Advice As the ‘Missing Link’
The MCG Multiple Sclerosis self-management support team decided to take on the implementation of a commercial IT product designed to facilitate patient-provider communication through a commercial project called, My Health Link. The team’s objectives were to: 1) have 100% of their patients document SMS goals through My Health Link, 2) achieve an 80% patient satisfaction rate with self-management support provided via this computer based tool and 3) 50% of patients enrolled in My Health Link would continue to use it for information and support 3 months after initiation. The aim of patient participation in the My Health Link program was to provide informational support to patients with multiple sclerosis, decreasing phone calls to physicians and staff time to screen and monitor those calls.

Clinicians encountered significant challenges with training patients to use the program. It wasn’t until the clinical team asked a patient advisor with multiple sclerosis to review My Health Link and train other patients to use it, that it began to take off. As their patient advisor began training others, questions arose around whether the vendor had tested the program with patients in real-life clinical settings.

II. Fargo Family Health Center—Patients and Providers are “Engaged”
Patients at Fargo Family Health Center decided that they wanted to create a blog and listserv for patients living with diabetes. Instead of signing onto a public blog/support group for patients with diabetes, the patient advisors felt that it was important that their providers know what their struggles and celebrations were in living with diabetes. They also wanted to learn from other patients being treated at the health center. Patients registered for the site and individual peer-to-peer phone calls were available for additional support. In the spirit of the phrase, ‘all politics is local’, patients decided to create a geographic and condition-specific community of support for themselves that could be accessed by their clinical providers. Technical issues such as security and sharing of clinical information were challenges for this team. However, the opportunity to create a local community of patients who could provide each other with support, provide information to their clinical partners and could impact the care provided at the local level helped them to decide to take on these issues and find effective ways of managing the issues of privacy and security for their participants.

III. Boston Mountain Health Center—Local Culture Matters
Boston Mountain Health Center in rural Northwest Arkansas decided to develop a patient portal for self-management support for patients with diabetes. Planned by patients and clinical staff jointly, the portal includes questions tailored to address the major challenges faced by patients with diabetes, tracking tools for goal setting and monitoring and even diabetic healthy recipes by local cooks. The involvement of patient advisors in the planning phase allowed the team to create a site that reflected the local cooking styles and traditions of their patients.

Lessons Learned
For MCG, in evaluating a commercial product, patients must ‘kick the tires’ before the clinical staff considers buying a product dependent upon patient use. Implementation and training issues are very different for patients than they are for clinical teams. Patients can be used as mentors and clinical extenders in training patients to use IT tools.

In some cases, the creation of a local tool may be of more help to a health center, than buying a commercial product, as was the case with Boston Mountain and Fargo Family Health Center. For Fargo Family Health Center, the involvement of patient and family advisors helped to create not just a resource for patient use, but a community of collaboration between patients and providers. Patient and family advisors at Fargo Family Health Center were able to teach their providers the value of creating a supportive on-line community for their diabetic patients that was accessible by providers. As Boston Mountain demonstrated in providing diabetic healthy recipes on its website, although translational solutions are available for language, cultural translation occurs at the local level.

In this initiative we learned that partnering with patients and families early in the design and implementation of IT tools can have significant benefits.

Doriane C. Miller, MD
National Program Director, Quality Allies/New Health Partnerships
A program of the Institute for Health Care Improvement funded by the California HealthCare Foundation and the Robert Wood Johnson Foundation

The views expressed in this article are those of the author and do not imply endorsement by The Robert Wood Johnson Foundation or the Health e-Technologies Initiative.