The following are highlights of innovative programs identified during interviews for the 2014 report, including descriptions of strategies to effectively engage individuals and families.

Care Alliance Health Center, is a non-profit community health center offering medical, behavioral, and dental health services to those who are homeless or living in and around public housing in Cleveland, Ohio. The program successfully serves a population deemed, by many, as most difficult to engage. The successful team-based approach is built on core principles of respect, dignity, empathy, patience, and acknowledging that the patient is in control. A robust outreach program meets individuals where they are...which could be under the bridge, in an abandoned building, or where they gather for meals. The team—an LPH, RN, Outreach Coordinator, and clinician—knows the first job is to "build trust." Medical treatments may be provided on-site, if the individual chooses. Another outreach service is the Homeless Book Club that brings together people from widely diverse backgrounds to find common ground sharing favorite books.

In hiring individuals for the health center, technical skills alone are not enough. Their ability, passion, and skills to communicate in person-centered ways are crucial to their success. Creating an environment that is devoid of traditional authority symbols (i.e. white coats) is important as well so that when people who are homeless connect with the clinic, they feel welcomed and comfortable. Even with its excellent track record in building trust, the Care Alliance Outreach Team learned that avoiding "surprises" is necessary to maintain and sustain that trust. For example, when the outreach team arrived with new IPADs, excited by the prospect of charting in the electronic record, they discovered that not involving the population they served in discussions about how and when to use the IPADS had a detrimental impact on established trust. The team reversed course and began again, involving patients in discussions about the use of this technology, asking about their concerns, issues, and ways to address them, while providing safe care and assuring accuracy of records. For Care Alliance, patient engagement is job #1.

CareOregon created the health resilience specialist role to collaborate with primary care clinics in encouraging individuals to stabilize and improve their health. The health resilience specialist is based in a primary care clinic setting and performs outreach to individuals identified as high users of health services, and who have complex medical and mental health/substance use disorder needs. Functioning as a liaison between the primary care clinic, specialty medical clinics, and other community/social services, the specialist sees individuals in their homes and other community settings. The health resilience specialist also builds the knowledge and skills of all clinic staff on topics important to engagement efforts, such as motivational interviewing and trauma-informed care. Both arenas require a highly developed awareness of one's own body language and the power of spoken language to engage or disengage another. Trauma informed care normalizes a person's behavior as an adaptation to a traumatic life or event for survival. Understanding the context of an individual's life encourages understanding and compassion as a response rather than negative labeling. The goal is to "do no harm" and build on the individual's resilience and find ways that the "system" can say "yes" in support of meeting that person's most pressing needs. Preliminary data shows a reduction in inpatient and emergency department visits among those individuals served by health resilience specialists. Read more about health resiliency specialists.

CareOregon Community Health Engagement Advocates. In 2010, as a participant in the Oregon RWJF/AF4Q program, Patients and Families as Leaders: Transforming Patient and Family Engagement in Oregon, CareOregon, a managed care organization, established a Member Advisory Council (MAC). As part of their commitment to member engagement, the recruited members of the council participated in a variety of educational opportunities to learn more about the role of advisory councils, meet other advisors across the country, and participate in a Popular Culture class offered by Multnomah County Health Department. Additionally, a new staff position was created, Member Program Coordinator, to serve as a liaison to the Council. This initial investment helped the advisors to actively and effectively engage in efforts to improve internal operations for CareOregon, provide feedback on dental coverage expansion for members, and expand their work in the broader community. Advisors enhanced partnership at the care level with Better Together, a guide developed collaboratively with clinicians and staff to help members prepare for clinic visits. Additionally, the engagement of the advisors influenced legislation requiring that Community Advisory Councils (CAC) are in place to inform the Coordinated Care Organizations (CCO) throughout Oregon on their communities' most pressing needs (Oregon's version of Accountable Care Organizations).

In its ongoing evolution, the MAC refined its purpose and changed its name to the Community Health Engagement Advocates (CHEA). These advisors have become passionate in their outreach to other members about prevention, partnership with health care providers, and self-management support. They partner with CareOregon to create a yearly open house for members on prevention, wellness, and partnership opportunities as CHEA members. They also create linkages to community resources. They participated in a Living Well with Chronic Conditions class and plan to be volunteer peer mentors in their own neighborhoods/networks to encourage participation in self-management programs. In October 2013, advisors were keynote presenters at a day-long workshop called Achieving Excellence in Healthcare Through Patient Engagement.

ChapCare (Community Health Alliance of Pasadena) is a federally qualified health center, serving patients in the San Gabriel Valley in Southern California. With multiple health centers providing medical, dental, behavioral health, and outreach and education services, ChapCare served 14,186 patients in 2012. ChapCare's Outreach Program, using a team approach, successfully engaged the community by providing preventative screenings (i.e. blood sugars and blood pressure checks) in settings such as schools and libraries. At the same events, ChapCare conducted eligibility screenings for Cover California and Medi-Cal. As a result, more than 80% of attendees enrolled in health coverage, with more than 50% newly eligible for Medi-Cal. Recently, ChapCare moved some of its outreach services into a retail space, expanding its efforts and helping to connect individuals to care. Additionally, ChapCare leveraged its limited resources for marketing and promotion of care by collaborating with other FQHCs in the Los Angeles's area to launch the Cover LA Initiative, an outreach, education, and enrollment initiative that uses non-traditional videos on Metro buses throughout Los Angeles County. Other patient and family engagement activities include involving patients and families in providing feedback on the website, conducting patient satisfaction surveys, involving patients on the Board Marketing Committee, and 30-day follow-up calls to newly enrolled patients to ensure coverage has occurred and to help remove any barriers that are identified. As a result of this outreach, staff members talk directly with individuals and identify health concerns and perceived barriers to health care access that can be solved by the staff providing easily understandable information.

Colorado's Department of Health Care Policy and Financing (HCPF) set a Strategic Priority on Client and Family Engagement. In 2012, with grant support from Colorado Health Foundation, the Colorado Department of Health Care Policy and Financing retained the services of the Institute for Patient- and Family-Centered Care (IPFCC). IPFCC conducted a site visit and reviewed key documents to assess the agency's engagement of clients and families in partnering to improve services, and develop policy and program recommendations. The resulting IPFCC report outlined a road map for advancing the practice of client- and family-centered care within the agency. The report made a number of recommendations that fell into the following categories:

  • Leadership's role in advancing client- and family-centered practices within the agency.
  • Infrastructure development and appropriate resource allocation to support meaningful client and family participation as advisors.
  • Alignment of human resources and workforce development to support staff in effectively engaging clients and their families.
  • Improvement of communication approaches by partnering with clients and families to develop and improve current methods to keep clients informed of changes in programs.
  • Encouragement of care providers to integrate patient- and family-centered practices into the client experience and measure outcomes.

HCPF has been working internally to implement key recommendations. In order to build effective engagement strategies and competence in these new collaborative partnerships, an educational and training plan for all employees is underway. The Engagement Liaison is working with units that need support in involving clients in benefits design, input on key initiatives, and preparing clients and others to serve as advisors to the agency. Changes have been made to the organizational structure to accommodate new roles and responsibilities to support this level of engagement. As a result of the work underway, less adversarial and more effective partnerships are being formed with clients, families, and stakeholders. The agency initiated a formal recruitment and on-boarding process for client and family advisors. Additionally, an executive sponsor was identified, a Client and Family Centered Care & Engagement Stakeholder Liaison & Project Manager hired, and a client- and family-centered care team comprised of key staff established. Recruitment is underway to add client and family advisors to the team.

For more information, please contact Olivia Covey.

Doctor's Care, a community-funded nonprofit organization located in Littleton, Colorado, offers a variety of programs designed to help serve low-income, underserved individuals, The Doctor's Care Clinic provides sick and well-care visits for children and young adults age 33 and under. The Doctors Care Sliding-Fee-Scale Program helps to connect the un- or under-insured patient with community providers who agree to provide care at a discounted rate. A care coordinator is provided to address challenges that impact an individual's access to care or management of health issues. Doctor's Care has a strong record of engaging both the population and the providers. As a result, emergency department use has decreased. More information on how to maximize health care for the uninsured without overwhelming providers, can be found on the Doctor's Care Maximizing Health Care website created as a resource for those interested in starting or expanding a volunteer medical program.

In this program, a variety of engagement strategies have proved useful. First, it is critically important to reframe the message to patients and families that they are valued, welcomed to the practice, and encouraged to be involved in their own health care. The Health Navigation program assists individuals who experience barriers with accessing care to navigate the system. Another innovation is the utilization of volunteers as navigators, working directly with patients who may not have adequate personal or community support. The volunteers receive extensive training to help patients move toward greater self-sufficiency by developing a relationship based on care and respect and connecting them with community resources. Personalized relationships, and the ability of the clinic health care professionals to reduce stress and solve acute problems, quickly builds trust.

To better understand how to structure care in ways to meet the population's needs, Doctor's Care offered a $5 gift card to patients to complete a survey administered via an electronic tablet. The survey asked what they would like the clinic to do differently, inquired about ways to improve comfort in the care experience, and asked how they would like to receive communication from the clinic. The clinic adjusted services and processes with the information received. This level of engagement is essential to understanding the needs of the individuals served.

Oregon Health Authority. Oregon started on innovation of health care services to the Medicaid population over two decades ago, starting with the development of the Oregon Health Plan. The Oregon Health Authority is a state agency that includes most of the state's health care programs, including Public Health, the Oregon Health Plan, Healthy Kids, employee benefits, and public-private partnerships. The intent is to give the state greater purchasing and market power to begin tackling issues of costs, quality, lack of preventive care, and health care access. The state has a practice of strong collaboration with stakeholders and seeks the public's input on key issues including health care.

Frequently through legislative action, Oregon directs the establishment of taskforces to make recommendations on state programs. Health care is no exception. Taskforce recommendations included setting Patient-Centered Primary Care Home standards, as well as developing a Patient-Centered Primary Care Institute to provide technical assistance to primary care clinics in support of their meeting the state standards. In the last few years, many of these taskforces have included patient and family advisors.

Legislation created Oregon's establishment of Coordinated Care Organizations (CCOs) (Oregon's term for ACO's) and—based on input from Medicaid patients, families, and advocates—required each CCO to establish a Community Advisory Council (CAC). Community Advisory Councils are groups of 16-20 individuals selected to represent a geographic area to work closely with their CCO on services, coverage, and evaluation of Medicaid services. According to state legislation, 51% of council membership is required to be clients or family members receiving Medicaid services. The remaining members generally are community representatives from public health, disability services, or other agencies who work with individuals served by Medicaid. Additionally, individuals representing the Medicaid population have been involved with the Oregon Health Authority's work on policy and program implementation. To support the effectiveness of the CCOs, the state created the Oregon Health Authority's Transformation Center. It is the state's hub for health system innovation and improvement, and is key to encouraging the widespread adoption of the coordinated model of care. The Center's goal is to increase the rate of innovation needed to deliver better health care at lower costs, and to improve the health of Oregonians.

Most recently the Oregon state legislature created the Taskforce on Individual Responsibility and Health Engagement to develop recommendations to establish mechanisms that meaningfully engage members of the Oregon Health Plan in their health and health care. Two of the eleven people on the taskforce were Medicaid members. The group extensively reviewed evidence-based and person- and family-centered approaches to patient engagement. Based on their suggestions the recommendations below were adopted by the Oregon Health Policy Board:

  • Each CCO and their delivery system partners empower individuals by providing education and support in how to navigate the delivery system and manage their own health. The CCO provides timely, complete, unbiased, and understandable information in accessible and appropriate formats on health conditions and treatment options, taking into account cultural, linguistic, and age appropriate factors.
  • OHA partners with CCOs through the Transformation Center to achieve economies of scale to make more affordable to all practices the use of the Patient Activation Measure (PAM), shared decision-making tools, and health literacy tools. The Transformation Center will work with the Patient Centered Primary Care Institute to train and educate practices on the implementation of such tools.

The Pediatric Practice Enhancement Project (PPEP) "ensures a coordinated system of care" for children and youth with special health care needs (CYSHCN) and their families, by placing trained parent consultants in "pediatric primary and specialty care practices to assist families in accessing community resources, to assist physicians and families in accessing specialty services, and to identify barriers to coordinated care." PPEP is an excellent model of family engagement at the organizational level that impacts family engagement at the individual level. A medical home initiative developed by the Rhode Island Department of Health in 2003, it was intended to increase the proportion of CYSHCN who have access to a medical home, fulfilling one of the Healthy People 2010's Maternal & Child Health objectives.

The Rhode Island Parent Information Network (RIPIN), a statewide parent run non-profit agency, has a contract with the Rhode Island Department of Health to recruit, hire, train, support, and supervise Family Resource Specialists (FRS). These FRSs are trained parents of CYSHCN, who serve in pediatric primary and specialty care settings as parent consultants. They create a link between the family, the pediatric practice, and community resources, providing peer support, identifying family needs, and helping families to find resources. The program was created to address barriers—reported by both families and physicians—to ensuring coordinated comprehensive care for CYSHCN.

Evaluation data demonstrate the program's favorable impact. Family Resource Specialists are prepared to address specific problems that families have with service access, referrals, accessing health insurance and appropriate special services in schools, addressing mental and behavioral health service needs, coordinating care, and accessing community services. Pediatric practices with on-site FRSs report better coordination of care and increased awareness of and ability to partner with community resources. Physicians documented that the PPEP model improved their understanding of patient needs, reduced scheduling delays and family wait times, and improved physician productivity. Families served by PPEP Family Resource Specialists report being more confident in managing their child's health care needs, having a better understanding of the health care delivery system, and of the available community resources. A retrospective longitudinal data analysis across 77 participating pediatric practices in PPE found lower health care utilization and costs for families served by the program. (Formal analysis pending.)

Team Up for Health, is a California HealthCare Foundation initiative to advance self-management support in five safety net clinics and one primary care/multispecialty group practice. This project provided the clinics and group practices with technical assistance to further individual and family engagement at three levels—in individual care, in quality improvement at the organizational level, and in expanding use of community resources. Each organization received support to partner with individuals and families through communication and collaborative skills coaching geared toward improving the direct care experience and creating advisory programs. This initiative resulted in tools, developed by individual and family advisors, to maximize a primary care visit.

In the project's evaluation, clinic leaders, clinicians, and staff emphasized the positive value of partnering with individuals and families. As one "Team Up for Health" participant commented during an interview, "Patient and Family advisors—culturally this was a change to the organization. The value they brought has been huge." Similarly, another participant observed, "We did not expect how much of a difference the patient advisors would make." Since this effort, The Center For Care Innovations and others have provided technical assistance to safety net clinics and group practices, building on the lessons learned about effective engagement at all levels of care.

Willamette Valley Community Health Marion-Polk Obstetric Mentoring Service (MOMS) Program. Willamette Valley Community Health, serving Polk and Marion counties in Oregon, is a Coordinated Care Organization, or CCO. Established in 2006, the MOMS Program provides support and care to pregnant women struggling with substance abuse, and helps them reach their goal to deliver babies free of drug or alcohol dependence. Prior to this program, more than 35% of pregnant women in the area did not receive prenatal care. The new MOMS model focused on social determinants of health and emphasized transparency, engagement, hope, and empowerment. This peer support program includes outreach mentors, weekly contact with a peer mentor, and coordination of care from a team that includes mentors and public health nurses. As a result of this innovative program, MOMS has helped to decrease the number of children born drug positive from 114 in 2005, to an average of 11 each year between 2009-20012. This is an astounding success rate. Since the program's inception, 332 infants, (99.4%, of enrolled MOMS participants) tested negative for illegal drugs at birth.

The Medical Foundation of Marion & Polk Counties MOMS PLUS Program partnered with the MOMS program to address relapse in participants who had been released from intensive services and were no longer receiving services and support. Currently, the MOMS PLUS Program offers long-term peer support to MOMS program graduates and to mothers in the community with recovery issues. These peer mentors help support, encourage, and teach mothers to navigate community services to assure successful recovery and to maintain a healthy home for themselves and their children.