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
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.
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
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.