From August 2005 through September 2006, and beyond, 20 innovative teams selected by IHI, RWJF and CHCF, worked together using behavior change and health care system models to develop and test the most effective and efficient approaches for providing support to patients of a sort which enables and encourages greater patient self-management while at the same time stimulating greater patient engagement in efforts to improve the design of health care services and systems and the delivery of health care services.
Though the year long, highly interactive phase of this effort is now concluded, several teams report continuing to work to incorporate what they learned from their involvement in the "Quality Allies: Improving Care by Engaging Patients" Learning and Innovation Community in their own settings, in a step-by-step, methodical way. The following groups participated in this Community, a component of the larger New Health Partnerships initiative.
Bellin Health System is a community-based health care network serving patients in urban and rural northern Wisconsin and Michigan. Bellin has been expanding on successful pilot work in planned care to offer comprehensive self-management support to all patients with chronic conditions in a growing number of its centers.
In these centers, staff understanding of how various parts of the care process interact has been improving, including support for self-management. As a result, the staff mindset at these locations has been changing. For example, there is much greater openness to the patient support person’s role in helping patients set goals.
As a team with proven quality results, the Bellin Family Medical Center Ashwaubenon site has been involving patients and family members in ongoing care improvement teams for some time. Encouraged by its participation in the QA project, Bellin has been working to establish patient advisory boards in the majority of its clinics. And patients have been included in a growing number of unit and system improvement teams, such as a Diabetes Expert Panel, whose work extends far beyond patient education and self-management support.
Boston Mountain Rural Health Center provides family-centered, coordinated and comprehensive primary, preventive and behavioral health care to persons in north-central and northwest Arkansas. By increasing patient and family involvement in service design and care quality, Boston Mountain has continued to enhance the tools and resources available to support patient self-management.
In this rural community, a web-based portal to the health care system and email access to Care Navigators assist patient and family members with diabetes and other chronic conditions with the self-management of those conditions. For example, portal access to an online resource center and a messaging function allows patients to seek support with motivational issues and other aspects of their work to change behaviors as well as with such things as monitoring blood sugar and seeking out individually appropriate dietary recommendations.
Probably the most significant transformation on the part of professional staff has been from thinking of the clinic as “ours” and something professional staff had to market to the community to now seeing the clinic and its services as a community resource. At this point, they see their role as that of developing or building what the community tells them is needed (e.g., a new Wellness Center). Patients help design enhancements and additions, and two to three patients work on specific teams tasked with improving care for diabetes, CVD, and depression.
The Brown University Family Care Center is an academic teaching practice of the Department of Family Medicine, and is an outpatient department of Memorial Hospital of Rhode Island serving patients in Pawtucket and Central Falls. Building on a group visit model for annual diabetes exams called “Team Works,” and with input from patients and families, the Family Care Center developed many tools to support patient self-management and a robust system that enable these tools to be used routinely in practice. They, too, have been testing the feasibility and usefulness of a web-based patient portal in their practice.
The most significant transformation has been from a focus on the physician’s goals and the physician’s agenda to focus on patient (and spouse) goals, needs and agenda. A standing Patient Chronic Care Advisory Panel is now in place and it has added significant responsibility for production of a periodic newsletter for patients to its list of responsibilities.
Cambridge Health Alliance is an academic public health care system and integrated delivery network serving seven communities in Eastern Massachusetts, and providing 17 percent of all uninsured care in the state. The Alliance engages patients and family members in the planning, implementation, and evaluation of patient tools and new processes, such as patient education materials, collaborative goal setting, and group visits. Topics include self-management of chronic health conditions, preventive care, medication management, and navigating the health care system. The target population they chose for their work in this program was the segment of adult patients who have greater than five active medical issues and are prescribed more than five medications.
While initial data has been promising, they are hopeful that over a period of two or more years they will be able to demonstrate particularly significant cost benefit when patient self-management, patient and family involvement, and collaborative decision making are systematically and consistently brought to bear in the care of patients in this high co-morbidity population. Involving patients and families in planning and improvement efforts in such areas as improving pharmacy visits, editing patient education materials on medication safety, and the nature of outreach services needed in the broader community, have continued to generate beneficial outcomes, and they are considering strategies to introduce patient and family advisors at the level of key assessment and planning activities undertaking by senior administration.
Cambridge Health Alliance is one of the few groups that has begun negotiating in earnest with third party and public payers for pay for performance reimbursement of the cost of providing self-management support and enhanced provider/patient collaboration.
Christiana Care is a not-for-profit private teaching hospital and health system in Delaware and neighboring counties serving 65 percent of the individuals in Delaware who are HIV positive. The HIV program is expanding current patient self-management models to develop culturally appropriate, family-centered group education, and support for patient self-management delivered by peer educators to patients with HIV and their families at the Porter State Service Center site.
Christiana focused on doing a better job with helping patients set self-management goals and worked to better track follow-up efforts relative to these goals. They found this difficult to do with the first procedure they created, so simplified the process by placing a simple form for recording progress notes on the back of the patient self-management goal sheets they were using. They also found it helpful to place colorful “importance and confidence ruler” posters in each exam room.
Community Health Partners (CHP) is a multi-site community health center in south-central Montana serving 9,000 rural patients annually. CHP is using a patient-centered approach to improve health outcomes for all patients with chronic conditions by expanding support of multidisciplinary team behavior change training, and use of embedded tools for goal setting and action planning. Building on their past training and a commitment to partner with patients and families to improve care, CHP providers have been working to improve their ability to listen to their patients to discover what motivates them to change.
More recent initiatives have included exam and waiting room redesign prompted by patient input and CHP's desire to promote the concept of patients as partners in health care; and pre-provider visits and home visits to support enhancement of self-management that were implemented by RN care coordinators. Monthly group visits for patients with chronic pain, working on goal setting and other self-management support skills have been successful, and additional group visits for those with DM and CVD addressing basic fitness and nutrition issues are contemplated to assist the self-managed change efforts of these patients. Support for self-management is now a standing agenda item for medical staff meetings and provider team meetings.
There is a growing awareness with all staff that patient input is essential. “We have seen how empowering it is for patients to be involved. We will continue to innovate and to use what we learned from other teams in this project as part of our larger commitment to strengthen this critical dimension of our work.”
The Cystic Fibrosis Foundation collaborating with the Cystic Fibrosis Center at Baylor College of Medicine, is evaluating self-management support enhancements for the children and adults treated at the medical school-affiliated cystic fibrosis outpatient clinics (Texas Children's Hospital and Baylor Clinic). The program is introducing tailored cystic fibrosis action plans customized within an electronic medical record system, encouraging goal setting during patient encounters, and updating self-management education materials for parents and patients. The team is working on protocols to transition patients from pediatric to adult care. The CF team has been reaching out to invite patients and families to assist with quality improvement efforts on an ongoing basis — not just rating clinic services on surveys and giving feedback following clinical, educational and/or support activities. One example has been to establish a CF Family Advisory Board and place individual parents on quality improvement work groups.
At the national level, the CF Foundation has built in patient and family involvement in both clinical and quality improvement activities as criteria for reaccreditation for all CF clinical centers. (The first of seven goals identified for quality improvement at accredited CF Care Centers is: “Make people with CF and their families full members of the care team.”). Experience at the Baylor-affiliated Texas Children’s CF Clinic is being shared via presentations at regional and national meetings and the posting of web resources on the CF Foundation’s website.
Family Health Care Center provides accessible, culturally competent family-centered health care to an ethnically diverse population in Fargo and Moorhead on the North Dakota border. The Center has focused on identifying at risk populations and designing services that improve access and enhance health outcomes for patients from these populations.
A refugee health mentor program, adult learning needs assessment, and multilingual health education resources center have all been enhanced by the addition of a new multidisciplinary group visit program and implementation of a computer-based system that is used to provide a variety of self-management tools to patients with diabetes.
Humboldt Del Norte IPA is an inclusive-model integrated practice association of 240 physicians and 140 allied health professionals serving an isolated and widely dispersed population in Humboldt County, California, ideally suited for a community-based approach to health care. Seeking patient and family input at every stage in the process, Humboldt Del Norte has transformed the curriculum of its Health Education Alliance (HEA), an ADA recognized diabetes education center. The work of the HEA is a major part of a community-wide implementation of the Chronic Care Model across virtually all of the primary care practices in Humboldt County. The National Coalition for Quality Assurance Physician Recognition for Diabetes was granted to the entire primary care community in 2004.
Using a life skills, peer-modeling approach that applies across all chronic conditions, HEA is beginning with the county's patients with diabetes, testing education models to create a model for delivery of life skills education that is self-sustaining and community-wide across their web-based community chronic care registry, which currently includes over 4,300 patients. Patient classes are scheduled flexibly. Patients set the agenda for the classes, and set goals and action plans. A peer support network, Diabetes Peer Outreach Education Team (DPOET) works alongside HEA. DPOET has developed a series of videotaped “patient diaries” to be used for education of providers, hospital personnel, and other patients. The support groups have been successful and members are committed to ongoing collaboration.
It should be noted that the Humbolt Del Norte IPA has a long and successful record of supporting patient self-management and integrated, team-based provider/patient collaboration in every aspect of its operations. It is one of several groups participating in the Quality Allies/New Health Partnerships project that considers broad implementation of self-management support strategies to be a critical aspect of the larger project in which it is engaged: the renewal (and in many ways the reinvention) of modern medical practice.
La Clinica de La Raza in the Fruitvale District of the city of Oakland, California, is a community health center with 22 sites providing a comprehensive array of primary health care services. In a long history of community orientation and patient participation, community health worker/promotora programs have been developed. Through enhanced connections with community resources and extended use of promotoras, La Clinica is empowering families with self-management skills to overcome childhood obesity.
The clinic faced challenges stemming from patient and family cultural perceptions which tended to differ from clinical perceptions as to whether or not obesity is a health problem, as well as the complexity of intervening simultaneously with both child and parent. La Clinica developed linguistically and culturally appropriate patient education materials that are being disseminated to other community health centers. The Parent Advisory Council, on their own, decided to work on how to help families better prepare for their visits with the doctor as well as on how to adapt the timing of parenting and nutrition classes in response to parent requests based on school pick-up issues.
The Parent Advisory Committee made recommendations about the content for a behavioral-based parenting curriculum for parents of overweight children. Then they attended a pilot of the three-class series and provided feedback afterwards. Their recommendations were implemented — leading to the addition of a fourth class and a post-course support group for those who attend the series.
MaineHealth is a nonprofit integrated health care delivery system serving 300,000 individuals in 10 counties in rural Maine. Working with patients and families to design new systems to support depression care and self-management support, MaineHealth is designing a diverse menu of activities to engage patients with depression. They are utilizing practice-based care managers and patient education centers, and linking primary care and behavioral health services at their Scarborough Family Physicians practice.
They report having worked to provide support for patient self-management for four years without patients being directly involved in the planning of these efforts. As a result of now including patients in the planning, they are changing their ideas about when people with depression are ready to start engaging in serious self-management activities. This, in turn, has led to a redefinition of what support for self-management means when working with those with depression. One small but significant example: Now they routinely ask patients for their preferences regarding family involvement.
They also routinely and systematically solicit feedback from patient advisors on a range of topics, from a brochure that lets patients know what to expect from the office regarding depression care to selection of a new name and logo for the program. Moreover they now have in place a system-wide plan to develop a patient and family advisory group looking across chronic conditions. Newer initiatives include the training of a patient advisor to facilitate Healthier Living Classes and developing stronger ties with NAMI.
Medical College of Georgia’s Augusta Multiple Sclerosis Center has significant experience in involving patients and families in improving quality of health care. This academic teaching and specialty center that serves 23 Georgia and South Carolina counties is focusing on the management of coexisting health and psychosocial issues. Their goal is to facilitate a system within which patients with multiple sclerosis and their families can advocate for and manage their own health care. Through a new online service called MyHealth, patients and families have been tracking their health histories, communicating with providers and systems, and accessing their health information. Work continues on developing innovative ways to use MyHealth to ensure the needs of patients and families are met.
More recent modifications including having patients become more proactive in goal setting and in contributing to what is put into the electronic record, at the clinical care level. They report using patient advisors at several levels, from the point of initial patient enrollment to the training of other patients to use the MyHealth link and making suggestions concerning system improvement and enhancement. Finally, institutional support for the patient advisor program and the provider/patient partnerships it makes possible has been growing.
Morehead Family Health Care Center is a nurse managed primary health care center operated by the University of Nebraska Medical Center College of Nursing. The Center provides primary health care and selected mental health services to vulnerable individuals and families in South Omaha. Morehead Clinic is utilizing bilingual and bicultural medical assistants as Chronic Care Coaches to partner with patients and families in support of self-management. Patients with Type 2 diabetes and/or hypertension and/or depression receive coaching services at the clinic and at community-based sites.
Morehead focused on having medical assistants work with patient coaches to develop and use new patient education curricula; and the coaches, in turn, trained some of the medical assistants in their patient coaching techniques. There were barriers encountered and alternate strategies to achieve these objectives were sought and tested. More recently steps were being taken to set up a patient advisory council.
The New York State Department of Health AIDS Institute is partnering with the Harlem Family Center at Harlem Hospital in a joint approach to promote HIV patient self-management and to coordinate adult and pediatric HIV care to affected patients and family members — approximately 1,200 patients annually. Harlem Family Center is empowering patients and families to create partnerships of care by addressing issues of education, language and cultural differences, and lack of familiarity with the health care system as barriers to self-management through a web-based health information program.
Their Consumer Advisory Committee and quality improvement team both involve and draw on the advice of a large pool of community advisors with lots of experience. They report that the trick has been to keep these individuals involved by engaging them in hands-on improvement efforts, such as looking at cycle time surveys.
Their involvement in Quality Allies Learning and Innovation Community has led them as much as anything else to do a good deal more to spread the word about this aspect of their work — i.e., promoting and supporting greater patient self-management and enhanced provider/patient collaboration. They have given presentations both at division and statewide meetings, where these accounts were well received. In May 2006, several team members were interviewed by Nursing Spectrum magazine for an article on patient self- management.
They have also begun to share more about these efforts with other community groups (e.g., with two major CBO's in the HIV care field, Housingworks and Community Health Network) that have expressed strong interest in patient self-management and asked to use their Action Plan tool.
Ocean Park Health Center, affiliated with the San Francisco Department of Public Health, provides care in the Sunset District’s multicultural and largely immigrant population. Ocean Park is introducing self-management into multiple venues outside the provider visit, broadening care to include allied health care providers and all staff who interface with patients and families. Clinicians work closely with peer leaders of self-management support to tailor interventions to multi-ethnic populations. Medical group visits, social work services, nurse led group visits and pharmacy visits, as well as peer led workshops provide one stop shopping for patients with diabetes.
The team trained health workers and an RN to see patients in planned visits two weeks prior to their next scheduled provider visit and linked those appointments to any laboratory appointments they might have. Appointments were segmented according to the language spoken. Each health worker is responsible for 20 patients with whom they build a relationship over time and work on goal-setting strategies. At the end of September 2006, the team conducted a facilitator training program for the Healthy Living Classes, which was open to representatives from other health centers. The team also innovated in the area of connecting to community programs, internships and other support mechanisms in order to provide a greater breadth of services to multiple ethnic/linguistic populations.
Ocean Park has also established a patient advisory council that meets every two months. This group has elected officers and developed a mission statement. Activities planned include participation at a community festival to check blood pressure, and to promote OPHC education and exercise classes. In addition, they have recommended changes affecting waiting room redesign, and have assisted with translation and evaluation of patient education materials. The Ocean Park Patient Advisory Council is very enthusiastic and its members are committed to continuing their work.
Park Nicollet Health Services is an integrated care system that offers care in 45 specialties and subspecialties at 25 clinics in Minneapolis and surrounding counties. To enhance care coordination and support of self-management, Park Nicollet is integrating a new chronic care tool, a “shared care plan” that assesses patient needs and preferences for care and encourages collaborative provider/patient health management goal setting. Jointly developed with patient and family advisors, the tool will be tested in an online format, integrated into the electronic medical record, and enhanced by multi-tiered coaching according to patient and family needs.
Park Nicollet Health Services has been seeking to significantly engage patients in this and other service improvement efforts. Patients participated in two rapid design sessions to define care plan requirements from the patient perspective. Patients participate in development of specific supporting materials and tools. A database of patients who are interested in getting involved in this project was created and is being maintained. Patients have also been involved in training programs for health care professionals concerning best practice use of the shared care plan, where they talk about their experience with using the new system.
Park Nicollet has been quite generous in their willingness to share the code for their shared care plan with other health care groups wishing to implement this sort of system in their own care settings.
Finally, Park Nicollet has begun to be invited to the table for discussions with third party and public payer reimbursement conversations. They are also working with some of the condition-/disease-specific advocacy groups in Minnesota, who see the importance of this work for their constituencies and are eager to advocate on behalf of reimbursement for this set of interventions with state agencies.
Roybal Comprehensive Health Center in East Los Angeles is a California medically certified ambulatory care facility and the home of a nurse-run Diabetes Management Program. Roybal is located in one of the poorest communities in LA County.
Through a community outreach program, peer educators are bringing ongoing follow up for patients and families with diabetes to community settings. A promotora program is also reaching out to connect overweight children and their families with community programs and health care resources. Changes tested by Roybal also include more routine support for and recording of patient-set self-management goals and work to enhance follow-up support for those goals.
Santa Clara Valley Medical Center, part of the county health and hospital system, is the major public sector health care provider serving the medically uninsured and underserved in Santa Clara County, California. The Center utilizes a broad treatment and intervention model that employs a combination of chronic care management, social work services, and the involvement of peer staff trained in self-management. With their Quality Allies/New Health Partnerships project, Santa Clara has been working to improve chronic care self-management outcomes through improved identification and referral of patients screened for depression from among all patients listed in their chronic care registry.
The team implemented their innovative approach, initially in a small pilot population and then more broadly. Those patients found to have depression scores above a certain level were contacted and encouraged to enroll in Healthy Living classes. Peer mentors teamed up with care coordinators to further engage these patients. Peer mentors also played a central role in delivering self-management support through peer led groups and in providing active follow-up with the same population. Closer linkage to primary care providers and utilization of additional sources of referral to the program are steps they hope will enhance the effectiveness of this initiative.
United Community Health Center serves a diverse population in rural and border communities in Arizona. “Teaching and Learning Together” is how they describe the process of patients learning to improve their self-management skills and provides learning how best to help them. United is providing tailored diabetes care using well integrated multidisciplinary care teams (incorporating primary care providers, behavioral health consultants, and community health specialists). Using a staged care approach, community health specialists work particularly closely with patients on their on behavior change efforts and with the development of their self-management skills.
Patient advisors are now encouraged to take more initiative, such as in being more apt to call patients to participate in follow-up group classes. A patient advisor was asked to join the board of directors and then to develop a patient advisory council.
At this point United is more active in its efforts to recruit patient and family member support, and provider support, for patient self-management. They are actively seeking stronger support form the organization’s senior leadership team for this family of activities.
West County Health Centers is a private nonprofit corporation consisting of two federally qualified community health centers that are the sole providers of primary health care for rural community residents in Western Sonoma County, California. With its HIV Consumer Advisory Committee, West County implements group visits to provide an opportunity for patients and family members to look to each other for expertise and support, and uses family systems theory to support and optimize patients’ social networking in support of HIV management.
West County has changed the structure of the office visit from one designed around a provider agenda to one focused on collaborative goal setting. The team has trained three peer advocates in a number of roles that support this focus. They have institutionalized patient and family involvement in the design of care by establishing a patient consumer advisory committee. They plan to expand the patient advisory role to include more creative engagement with the design of self-management support. They note that senior leadership in the organization strongly supports these changes in patient and family involvement.
