Engaging Patients and Families in the Medical Home

June 2010
AHRQ Publication No. 10-0083-EF
Prepared For:
Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, 540 Gaither Road, Rockville, MD 20850, www.ahrq.gov

Contract Number: HHSA290200900019I TO2
Submitted By: Mathematica Policy Research, 600 Maryland Avenue SW, Suite 550, Washington, DC 20024-2512
Authors: Sarah Hudson Scholle, Phyllis Torda, Deborah Peikes, Esther Han, and Janice Genevro

Table A.1. Examples of tools: engaging patients/families in the care of the individual patient
Patient Care Partnership (American Hospital Association, 2003) Communication and information sharing The Patient Care Partnership poster and brochure for patients; brochure is available in multiple languages. Plain language poster and brochure replaces the AHA’s Patients’ Bill of Rights and describes what patients should expect during their hospital stay:
  • High-quality hospital care.
  • Clean and safe environment.
  • Involvement in their care.
  • Protection of their privacy.
  • Help when leaving the hospital.
  • Help with billing claims.
Center for the Advancement of Health (CFAH)/Stoeckle Center (Gruman et al., 2009a) Communication and information sharing Creating a patient guide for a Medical Home physician practice.
CFAH/Stoeckle Center suggests that each clinic or practice develop and distribute a short guide and/or use it as a template for its Web site.
CFAH created three resources that medical home practices can use to create a simple guide for their patients. The guide should include routine information such as how to contact the practice, location, hours, appointments and payment policies. The guide should also provide instructions for other kinds of communication with the practice like notifying the practice about special needs, the availability of tests and the policy for notification of test results, how to get care after hours or in an emergency, instructions for securing prescription refills, and addressing problems with medications.
The resources are:
  • List of elements that constitute a basic guide.
  • Sample guide to illustrate finished product.
  • Template for practice to design its own guide.
National Partnership for Women and Families, 2009 Communication and information sharing Tools and resources for patients and consumer advocates on the medical home, what it means for patients and ways that advocates can help shape and promote medical home proposals at the local and national level. Patient Resources:
  • “A Medical Home Is About You” is a guide for patients and consumers on the medical home.
Consumer Advocate Guides:
  • Consumer Principles.
  • Understanding the Medical Home.
  • Why Consumer Advocates Should Get Involved.
  • How Consumer Advocates Can Get Involved.
National Patient Safety Foundation NPSF, 2008 Communication and information sharing The Universal Patient Compact: Principles for Partnership™ is a statement of principles established by NPSF that defines the elements of true and effective partnering between patients and providers. The compact describes the role of the “health care partner”:
  • Include you [patient] as a member of the team.
  • Treat you with respect, honesty, and compassion.
  • Always tell you the truth.
Parallel statements for the patient’s role:
  • Be a responsible and active member of the health care team.
  • Treat providers with respect, honesty, and consideration.
  • Always tell providers the truth.
Primary Care Information Project, New York City (Sarah Shih, personal communication); similar process used by Cleveland Clinic, Group Health of Puget Sound, and Kaiser Permanente Communication and information sharing After-visit summary. Topics covered include diagnoses; key findings from visit (such as blood pressure); treatment recommendations, including referrals to specialist or community services; and provider contact information. A template is included in the electronic health record and can be printed and provided to patients and families.
MassGeneral Hospital for Children, undated Self-care Written care summary for children with chronic conditions. The summary includes information on diagnoses, medications, providers, and community supports, as well as “common presenting problems, specific suggested management and other things you should know (likes, dislikes, strengths, difficulties, what upsets/calms me).” A template for this information is included in the electronic health record and can be printed or stored on a flash drive and provided to patients and families.
Table A.2. Examples of interventions/programs: engaging patients/families in the care of the individual patient
Program (reference)TargetDescriptionEvidence Base
Collaborative care management/Chronic Care Model (CCM), MacColl Institute (Improving Chronic Illness Care, 2010) Self-care Purpose: Encourage high-quality chronic disease care.
Components: Evidence-based change concept in six areas: self-management support, community, health system, delivery system design, decision support, and clinical information systems.
Bodenheimer et al. reviewed the literature in 2002 and reported that 32 of 39 studies testing the chronic care model showed improvements in the process or outcomes of care for diabetes, and 18 of 27 studies on three chronic conditions (congestive heart failure, asthma, and diabetes) showed reduced health care costs or lower use of health care services. Studies on depression have shown improvements in outcomes but not in costs (Bodenheimer et al., 2002b; Gilbody et al., 2003).
An evaluation team across 51 participating sites in four collaboratives involving almost 4,000 patients with chronic conditions showed that:
  • Organizations were able to improve, making an average of 48 changes in 5.8 of the 6 CCM areas.
  • Patients with diabetes had significant decreases to their risk of developing cardiovascular disease
  • Patients with heart failure were more knowledgeable, were more often on recommended therapy, and had 35% fewer hospital days.
  • Asthma and diabetes pilot patients were more likely to receive appropriate therapy.
When contacted a year later, the care teams reported that involvement in the collaboratives was rewarding. During that year, 82% of sites had sustained the changes and 79% had spread change to other places or diseases.
Stanford School of Medicine, Patient Education Research Center: Chronic Disease Self-Management Program, (2010) Self-care Purpose: Help people gain self-confidence in their ability to control symptoms.
  • Programs are based on self-efficacy theory and focus on helping participants to set and achieve incremental goals to strengthen a sense of personal effectiveness. In this way, the program is not focused on disease education but rather on skills development.
  • Content includes adoption of exercise programs, cognitive symptom management (such as guided relaxation), nutritional change, and management of fear, anger, and depression.
  • In-person and on-line programs are available on chronic disease, HIV/AIDS, arthritis, diabetes, chronic pain, cancer survivors, and caregivers.
  • Programs are usually in the community, not in a health care setting. Peer leaders conduct workshops; participants often have different kinds of chronic conditions.
  • Trained leaders follow a curriculum in small-group workshops that usually meet once a week for about 2 hours over a 6-week period.
Evidence from numerous controlled clinical trials show positive impact on patient outcomes and variable impact on utilization.
Positive effects on physical and emotional outcomes and health related quality of life include greater energy/reduced fatigue, more exercise, fewer social role limitations, better psychological well being, enhanced partnerships with physicians, improved health status, and greater self efficacy. There is variable impact on pain symptoms.
Reductions in emergency room visits (four studies), fewer hospitalizations (three studies), fewer hospital days (four studies) and outpatient visits (two studies) have been reported in these trials.
Electronic Linkage System (eLinkS, Krist et al., 2010) Self-care Purpose: Demonstrate impact of an EHR-based tool to promote health behavior counseling.
  • The EHR tool allowed for automated referrals, prompted the clinician to counsel patients on health behavior needs, and offered a selection of options. When the patient agreed to a referral to telephone or group counseling, the EHR automatically e-mailed contact information to the counseling program staff, who then would contact the patient (rather than having the patient call the program).
  • When clinicians selected computer care, the EHR forwarded an e-mail to the patient with a link to the educational Web site and instructions for e-counseling.
  • Grant funding allowed the eLinkS program to provide up to 9 months of free, intensive counseling services to patients who enrolled for a 5-week period, after which the demand for referrals exceeded the project budget.
The program increased the rate patients were referred for behavioral counseling. When counseling was free, approximately one of five patients with an unhealthy behavior and an eLinkS prompt were referred for counseling. However, when patient charges were instituted, referrals decreased by 97% (from 21.8% to 0.7%): clinicians asked fewer patients about health behaviors (37% vs. 29%, p<0.001), offered fewer patients referrals (29% vs. 6%, p<0.001), and patients were less interested in accepting referrals (76% vs. 14%, p<0.001). In interviews, patients and clinicians cited cost as a major barrier.
Ideal Micro Practices/ HowsYourHealth/ CARE Vital Signs, Centers for Health and Aging, Dartmouth Medical School (Moore et al., 2006; Wasson et al., 2003; Wasson et al., 2008) Self-care Purpose: Support small practices with a focus on Quality Improvement (QI) and team-based care centered on the patient.
  • Curriculum on developing successful clinical microsystems, a small, interdependent group of people who work together regularly to provide care for specific groups of patients.
  • Use of a low-cost technology—howsyourhealth.org—to support patient-centered care planning and monitoring.
  • CARE Vital Signs tool for assessing patient needs. CARE stands for Check what matters to patients, Act on that assessment, Reinforce the actions, and systematically Engineer or incorporate actions into staff roles and clinical processes. There are three versions, for adult, adolescent, and geriatric patients. The topics include pain, emotion, body mass index, general health habits, confidence with self-management, and possible side effects from medications.
  • The data are collected either by the medical assistant and patient during check in or patients complete the data in advance using howsyourhealth.org.
  • The results of the CARE tool provide clinicians with information on patient needs and allow the practice to prioritize and match resources to meet those needs.
  • In addition, the practice or microsystem can use the data to measure their patterns of performance, feedback the data to the practice, and make changes based on the data.
Data from howsyourhealth.org suggest that small practices that have adopted the clinical microsystems approach have improved patient-reported quality, experiences, and results.
Patients using practices that have adopted the model are more likely to report that they receive care that is “exactly what they want and need exactly when and how they want and need it” (68% vs. 35%) compared to patients in usual settings. They are also more likely to report very high levels of continuity (98% vs. 88%), efficiency (95% vs. 73%), and access (72% vs. 53%). Patient ratings of very good information (83% vs. 67%) and clinician awareness of pain or emotional problem are also higher (87% vs. 69%).
Initiative to Integrate Self-Management Support into Clinical Practice, California HealthCare Foundation (Kanaan, 2008) Self-care Purpose: Implement patient self-management for diabetes in health care organizations serving low income populations.
  • The practices received help in system redesign, staff training, and measurement and feedback, through conferences and collaborative learning.
  • The core elements to support patient self-management were motivational interviewing, along with measurement and feedback.
  • A sample diabetes self-care plan, focusing on self-management goals and self-efficacy, was used.
The evaluation focused on implementation issues and did not report on clinical outcomes. Key lessons were:
  • Practice redesign is required to support patient self-management.
  • It is important to set realistic expectations for staff and patients about the time it will take for improvement.
  • Staff and patients need training and confidence building.
  • While staff (other than physicians) can provide support for patient self-management, training and mentoring for medical assistants and lay workers is critical.
Patient-Centered Medical Home (PCMH) Pilot, Group Health Cooperative (Reid et al., 2009) Self-care Purpose: Evaluate impact of a medical home model.
  • Structural and team changes including smaller rosters, team member co-location.
  • Point of care changes including promotion of e-mail and phone visits, previsit chart review and visit planning, and collaborative care planning.
  • Patient outreach changes, including group visits and self-management workshops.
  • Management changes, including daily huddles, rapid process improvement cycles, and a visual reporting system.
The evaluation compared patients receiving care in PCMH pilot sites to patients receiving care in other traditional primary care sites. The evaluation showed that, compared to patients served in traditional clinics, patients at PCMH sites had:
  • Fewer emergency visits, hospitalizations, and in-person primary care visits.
  • Higher ratings of patient experiences.
  • More frequent communications with their providers by phone and e-mail.
  • More group visits and self-management support workshops.
  • Staff was less likely to report burnout.
Practice-Linked Online Personal Health Records for Type 2 Diabetes Mellitus, Partners Health Care (Grant et al., 2008) Self-care Purpose: Evaluate impact of access to a diabetes-specific personal health record on diabetes control.
  • Intervention arm: Access to a diabetes-specific personal health record (PHR) that imported clinical and medications data, provided patients with their clinical information linked to tailored decision support, and enabled the patient to author a "Diabetes Care Plan" for electronic submission to their doctor prior to upcoming appointments.
  • Control arm: PHR to update and submit family history and health maintenance information.
Patients were randomized to intervention or control. More patients in the intervention arm had their diabetes treatment regimens adjusted (53% vs. 15%) compared with active controls. However, there were no significant differences in risk factor control (HbA1c, BP, and LDL-c) between study arms after 1 year.
Electronic Communications and Home Blood Pressure Monitoring, Group Health (Green et al., 2008) Self-care Purpose: Determine whether Chronic Care Model care delivered over the Internet improves hypertension care.
  • Home BP monitoring and secure patient Web site training only.
  • Home BP monitoring and secure patient Web site training plus pharmacist care management delivered through Web communications.
  • Control arm received usual care.
Patients were randomized to one of three arms. Patients assigned to home BP monitoring and Web training-only group had a nonsignificant increase in the proportion with controlled BP compared with usual care. However, compared with usual care, patients who received home BP monitoring and Web training plus pharmacist care had a greater reduction in systolic and diastolic components of BP, and improved BP control.
21st Century Care Innovation Project, Kaiser Permanente (King et al., 2007) Self-care Purpose: Improve patient care delivery by making primary care more patient centered; simultaneously develop a more fulfilling and sustainable work environment for physicians and staff.
  • Innovation (quality improvement) teams.
  • Enhanced communication: e-visits, scheduled telephone appointments, and secure messaging.
  • Population-based care management.
Early results suggested improvement in patient experiences results.
Comprehensive Health Enhancement Support System (Gustafson, 2002) Self-care Purpose: Offer patient-oriented interactive, computer-based programs that provide information, help with decisionmaking and behavior change, and emotional support.
  • Information services for common questions, instant library links to full-length articles, consumer guide for relevant services, links to other high-quality Web sites, and a resource directory for local and/or national services.
  • Communication services offer information and emotional support through bulletin boards; discussion groups to share information and support; “ask an expert” for confidential responses to questions by specialists; journaling provides a private place where users write their deepest thoughts and feelings in a timed, controlled environment; personal stories show how people cope with conditions and illnesses; and video gallery shows patients and their families describing how they coped with disease and treatment.
  • Analysis services help users think through key issues; health tracking collects data every 2 weeks and displays graphs showing changes over time; decision-support tools help users make important treatment decisions; and the action plan employs a decision theory model to help patients build, evaluate, and improve their behavior change strategies.
Studies in diverse conditions and populations have shown positive effects on patient experiences, self-efficacy, and health behavior. In particular, research on HIV/AIDS and breast cancer in low income minority populations shows that minority and elderly patients are as likely to use Internet-based interventions as the younger, more affluent majority but they differ in the type of services they use. Underserved groups are more likely to use information and analysis services and less likely to use discussion groups. Underserved groups benefit more from Internet-based services because they start at a greater disadvantage and the services they use have more benefit.
Fax to Quit (New York State Smokers Quitline, undated) Self-care Purpose: Support smoking cessation by linking patients to community resources.
  • Health care providers refer their tobacco-using patients to the New York State Smokers’ Quitline using the Fax to Quit referral form.
  • Patients receive followup call from a quit coach who provides a stop-smoking or stop-smokeless-tobacco counseling session, along with resource information tailored to their specific situation.
  • Quitline faxes back a progress report with information about the patient’s tobacco-use status.
  • Electronic interface is available for practices with electronic health records.
Evaluation data are not available.
Care Transition Intervention (Coleman et al., 2004; Coleman et al., 2006) Self-care Purpose: Reduce readmissions by coordinating between hospital discharge and outpatient care.
  • Provide information to patient on medication self-management and how to recognize and respond to possible “red flags.”
  • Patient-centered health record owned and maintained by the patient to facilitate cross-site information transfer.
  • Support including calls or visits from a transition coach.
  • Timely followup care.
Research trials show that the intervention reduces readmissions and cost of care; it also increases patients’ confidence in managing their condition, communication with their health care team, and understanding of their health care.
Heart 360 (American Heart Association, 2010) Self-care Purpose: Provide computer platform for patients to monitor blood pressure, weight, physical activity, and other issues relative to cardiovascular health; allow providers to monitor self-care of patients.
  • Patients provide information manually or upload data directly from devices such as blood pressure monitors.
  • Patients provide their physicians access to their records or download and print information prior to visits.
  • Health care providers can sign up for a service that allows them to invite patients to use the Health Vault, and then use the information for creating patient-based and practice-based reports and for sending messages to their patients.
Evaluation data are not available.
Community and Clinician Partnership for Prevention, North Carolina Network Consortium (Kemper et al., 2009) Self-care Purpose: Assist primary care practices in making successful referrals to community-based organizations for patients with unhealthy behaviors (e.g., tobacco use, sedentary lifestyle, poor diet).
  • Access to Web-based resources.
  • Monthly conference calls among referral "champions" from each practice to discuss progress in building partnerships.
  • Identified staff person at community organizations to facilitate referrals.
The program did not increase referrals to community-based organizations, even among physicians at three practices who were initially the most enthusiastic about the initiative. On the primary care practice side, providers expressed concerns about issues such as the costs of the community-based programs to the patients. On the community-based organization side, turnover disrupted referral partnerships.
Ambulatory Care Compact to Organize Risk and Decision Making (ACCORD) project, Massachusetts General Hospital (Chueh, 2008) Self-care, Decisionmaking Purpose: Extend clinical decision support systems currently focused on making a decision to address followup and “closing the loop.”
  • ACCORD maintains a database of different clinical conditions that commonly need some form of followup care (preventative care, followup of abnormal findings, medication monitoring, etc.). For each condition, templates are created with the most commonly used options for care plans.
  • Provider and patient come to an agreement about selecting an option for a specific ACCORD. Patient learns about the options and understands the importance of following the plan. “Watching and waiting” and informed refusal are also options.
  • Documentation is generated in the EHR that reflects the choice or the “watch and wait” or informed refusal options.
  • ACCORD sends reminders to the patient and provider when a care goal has not been met.
  • Patients can initiate new decision “compacts” for discussion with their provider, get relevant medical information about their treatment options, and list other resources that may help with their decision.
Research is still under way.
ProvenCare program, Geisinger Health System (Casale et al., 2007; Paulus et al., 2008) Self-care, shared decisionmaking Purpose: Test whether an integrated delivery system can successfully implement an evidence-based, pay-for-performance program for coronary artery bypass graft (CABG) surgery.
  • Patient engagement via educational materials and a “patient compact” that both the patient and provider sign.
  • Implementation of evidence-based processes of care supported by EHR.
  • Fixed-price payments for preoperative, inpatient, and postoperative care.
Compared to historical experience, patients treated under the ProvenCare program had shorter hospital stays and mean hospital charges declined by 5.2%.
The ProvenCare program has been extended to hip replacements, cataract surgeries, percutaneous coronary interventions, bariatric surgery, lower back surgery, and perinatal care.
Primary Care Pilots for Shared Decision-Making (FIMDM, 2010) Decisionmaking Purpose: Integrate shared decisionmaking and decision aids into day-to-day clinical practice.
Stillwater Medical Group implemented a process for distributing decision aids and providing care support for patients with breast or prostate cancer.
  • Prior to initial consultation with the specialist, patients meet with a nurse care coordinator to assess knowledge of disease and review pathology results and treatment options.
  • Care coordinator and patient go over decision aid.
  • Patient reviews materials before he or she returns to specialist for medical care planning.
  • Team provides support and coordination of care throughout treatment based on individual patient needs.
Other examples:
  • Health libraries where decision aids can be viewed and one-on-one decision support is provided.
  • Practice-based health coaches and health educators provide one-on-one decision support to patients after viewing a decision aid.
  • Practice improvement meetings for training.
  • Group medical appointments where providers can discuss decision aids with multiple patients.
Research is still under way. General observations to date suggest:
  • Shared decisionmaking needs to be part of a commitment to patient-centered care at all levels of the organization.
  • Allowing sufficient time for shared decisionmaking during patient visits is critical.
  • Adapting the shared decisionmaking approach to the type of decision and patient population is important. For example, FIMDM suggests making decision aids available to patients prior to scheduled visits for screening decisions; incorporating into multifaceted interventions (condition management programs) or group visits for chronic disease management; and prior to specialist consultation for preference-sensitive conditions when elective surgery is being considered.
  • Brackett et al. (2010) found that physician satisfaction was greater when patients saw decision aids before the visit.
Anonymous reporting of potential medical errors, Beth Israel Medical Center Department of Pediatrics (Neuspiel et al., 2008) Safety Purpose: Encourage greater reporting by staff of medical errors and near misses.
  • Simple, anonymous medical error report form.
  • Drop-off boxes made available for anyone to use.
  • Pediatric safety champion team committee, with representatives from all practice staff disciplines, reviews each report, identifies root cause(s) of error or near miss, and develops interventions to address the cause(s).
  • Monthly report on errors and their solutions.
The annual number of reports of errors or near misses increased from 5 to 80. Reports originated from physicians (45%), nurses (41%), other staff (9%), and parents/patients (5%).
The reports spurred patient safety improvement activities.
Medication reconciliation, Mayo Clinic (Varkey et al., 2007) Safety Purpose:Improve the accuracy of medication lists and to avoid medication errors.
  • Reminder letter to patient 1 week prior to visit.
  • Physician assistant reviews medication list at the visit, makes changes.
  • Physician reviews list and updates the EHR.
  • New list printed and given to the patient.
  • Clinic-wide training for staff.
The frequency of no medication lists in the medical record fell to 6% from 26%; medication documentation discrepancies fell by more than 50%.
The intervention is continuing after the pilot.
Guided Care (Boult et al., 2008; Boyd et al., 2007; Leff et al., 2009) Self-care Purpose: Improve care for seniors with multiple chronic illnesses by coordinating care, facilitating care transitions, and acting as patient advocate across health care and social settings.
  • Predictive models based on insurance claims data identify patients with the highest predicted need for complex health care in the near future.
  • Care coordination is provided by specially trained nurses working on-site in primary care practices.
  • Guided care nurses working with PCPs, specialists, caregivers, and community organizations coordinate and improve patient care across providers and settings.
  • Clinical components that provide comprehensive assessment, evidence-based care planning, development of a care plan for the primary care provider and other health professionals, and development of brief version of care plan for the patient and family.
  • Patients are referred to a self-management course.
  • Condition of patients monitored monthly.
  • Education and support for caregivers.
  • Program facilitates access to community resources.
Randomized trials of Guided Care have shown improvements in the quality of care. Costs are lower, primarily due to lower hospitalization and emergency room use, but the difference is not statistically significant.
Medical Home for Children With Special Health Care Needs (AAP, 2004; Homer et al., 2008) Organization, self-care, decisionmaking Purpose: Address unmet health needs of children with special needs.
Ideal attributes of medical home are “accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective” care.
Specific components evaluated in this review:
  • Care coordination with community resources and primary and subspecialty care.
  • Care planning with patient and family.
  • Population monitoring.
  • Physical and operational modification.
  • Clinical care.
  • Connection with primary care provider/practice.
  • Cultural competence.
A review of 33 articles on 30 distinct studies examined the impact of the medical home. Six studies used randomized designs and 4 had nonrandomized comparison groups. The most common condition studied was asthma. In general, the studies demonstrated that functions associated with medical home were associated with improved family centeredness, timeliness, effectiveness, health status and family functioning, but not with measures of safety or costs of care.
Table A.3. Examples of engaging patients/families in practice design/quality improvement
Patient/Family Advisors MCGHealth (Pat Sodomka, Nettie Engels, personal communication) Setting: Over 130 trained patient/family advisors who participate in advisory councils, quality and safety teams and facility design processes.
Components:Patient and family advisors participate in a variety of activities including:
  • Serving on advisory councils for the hospital or specific clinics.
  • Training for new staff (advisors participate in half-day session on patient-centered care, which includes an opportunity for them to tell their personal story and discuss patient-centered care).
  • Observer during patient rounds (advisor completes checklist on topics including bedside manner, evidence of respect and caring, involvement in teaching and decisionmaking during rounds; and debriefs with the care team afterwards).

Evaluation: Not available.

Medical Home Initiative for Children with Special Health Care Needs (CSHCN) (Carolyn Allshouse, personal communication) Setting: Initiative convened by the Minnesota Department of Health through a Federal grant.
Components: Pediatric practices were required to include two family members along with a physician champion and nurse care coordinator in their practice QI teams and as participants in the learning collaborative. As members of the QI team, parents offered suggestions for addressing problems that providers often did not see. Some parents also started networking groups among families in the practice and community to identify additional family needs and communicate with families.
Evaluation: The evaluation concluded that that there were statistically significant improvements in care based on measurements using the Medical Home Index. Providers concluded, “Parent participation on their teams was a critical component to implementing effective Quality Improvement strategies.” Anecdotally, the program leader noted that “parents were excited to have the opportunity to give back to the clinic and the physician with which they have a relationship. They were excited to be asked to be involved.” In addition, clinic staff gained a better understanding of patient needs and issues and how they could help to meet those needs.
Parent Advisory Group at Nashaway Pediatrics (Polewarczyk and Cleary, 2004) Setting: A five-physician medical group in Sterling, Massachusetts, is an example of using a parent advisory group in a pediatric practice. The advisory group was originally developed as part of a research design but has continued after that study.
Components: The goals of the group are:
  • Identify strengths and weaknesses of service delivery.
  • Provide mechanism for families to express satisfaction and concerns.
  • Keep practice informed about supports, resources, and opportunities in the community.
  • Ongoing educational programming for families and staff.
Activities were designed to improve care in the practice and also to meet the needs of CSHCN families more broadly. For example, the advisory group worked with the practice to develop and implement a short previsit survey of children that focuses on issues of concern to the family. Children complete the survey asking them to check “what I like about myself” and “what I worry about” (how I look, my family, my schoolwork, etc.). In addition, the group planned and conducted a workshop on individualized educational plans for families in the community.
Evaluation: Not available.
Patient Advisory Councils, Dana Farber Cancer Center (Reid Ponte and Peterson, 2008) Setting: Dana Farber Cancer Center reviewed patient-centered principles as part of planning process for joining operations with Brigham and Women’s Hospital.
Components: Advisory councils exist for both adult and pediatric patient care and are meant to serve as the “patient voice” and institutional infrastructure for including the patient and family member perspective at all levels of organizational decisionmaking. Councils are comprised of patients, family members, executive leadership, and staff. Responsibilities include:
  • Providing information to hospital leaders and staff about patients' needs and concerns.
  • Helping plan patient-care areas and new programs.
  • Making changes that affect patients and family members.
  • Encouraging patients and families to be involved and to speak up.
  • Strengthening communication among patients, family members, caregivers, and staff.
Formal bylaws describe eligibility, recruitment, selection, membership expectations, among other topics.
Evaluation: Reid Ponte and Peterson (2008) report that involvement of patients and families has made group leaders sensitive to the need for input from other stakeholders, such as nonclinical staff.
Table A.4. Examples of engaging patients/families in policy
Minnesota Health Care Home Initiative (Jeff Schiff, personal communication) Medical home planning and implementation A patient/family/consumer council was formed to give input and oversee the development and implementation of the demonstration. In addition, Minnesota is providing opportunities for training to support the successful engagement of patients and families. The State provided scholarships for teams of clinics (that included patients and families) to attend the Institute for Family-Centered Care Intensive Seminar and $2,000 mini-grants for 10 clinics to implement/jump-start patient-family-centered care activities within the clinic. In addition, a conference for prospective health care homes included presentations by national and local speakers on the topic of patient/family-centered care and utilizing patients and families as advisors.
Maine Medical Home Initiatives (Malouin, 2009) Medical home planning and implementation Consumer representatives were involved in planning and governance of the Medical Home demonstration. Leaders convened focus groups with consumers to make sure that the PCMH model anticipates and integrates care for everyone, particularly those with greatest needs.
Draft Principles of Consumer-Driven Care, Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration (Center for Mental Health Services, undated) Principles for engaging patients in mental health policymaking Substance Abuse and Mental Health Services’ call for care to be “consumer-driven.” The draft policy states:
“Consumer-driven means consumers have the primary decisionmaking role regarding the mental health and related care that is offered and the care received. In addition, the consumer voice is paramount in determining all aspects of care for consumers in the community, State, and Nation. The consumer voice must be present and fully represented both collectively and individually with regard to all aspects of service delivery from planning to implementation to evaluation to research to defining and determining outcomes. This includes (but is not limited to) the policies and procedures governing systems of care; choosing supports, services, and providers; setting goals; designing and implementing programs; monitoring outcomes; and determining the effectiveness of all efforts to promote mental health and wellness.”
Federal law also requires that each State and territory convene a mental health planning and advisory council as a requirement for obtaining Federal funds. The councils must include consumers of mental health services and their families, as well as representatives of key State agencies (http://www.namhpac.org/).
Aurora Health Care Community-Based Patient Advisory Council (Leonhardt, Deborah, Pagel, 2006) Involving consumers in patient safety activities Aurora Health Care, an integrated delivery system in Wisconsin, received funding from the Agency for Healthcare Research and Quality to create a community-based patient safety council focused on improving medication safety for the outpatient population. Through this council, Aurora Health Care hoped to create a place where patients and health care providers could discuss the barriers and opportunities for a safe and effective medication process in the outpatient setting. They anticipated this would lead to the development of effective interventions that could be disseminated and adopted throughout the community. Based on their experiences, Aurora Health created a toolkit for developing community-based patient advisory councils. Patients, providers, and health care organizations report having benefited from this process.
Strengthening Families (Center for the Study of Social Policy, 2008) Engaging families in policymaking for child welfare services Strengthening Families is a program to help families with at-risk children (often receiving child welfare services). The program focuses on developing protective factors, such as parental resilience, social connections, and knowledge of parenting and child development.
A key component is family engagement. States have used a “world café” process— a way to get input from a group of people—for the dual purpose of increasing parent engagement in their children’s needs and services as well as helping to develop a pool of parents to participate in policymaking at the local or State level. At community meetings, trained parent facilitators host a structured conversation among parents on a few key questions. The “world café” refers to the way the participants move from table to table where different topics are being discussed. The parent facilitators take notes and a summary of the discussion is shared with the group and collated with other “cafes” to get broader input. While the primary focus of the “cafes” is to gather information to share with policy makers, it is also an opportunity for parents to gain peer-to-peer support. Host parents also build a body of knowledge about other families’ experiences that allows them to participate more effectively in a multi-stakeholder policy development and evaluation process.
National Working Group on Evidence-Based Health Care (2008) Involving consumers in research The purpose of this project was to support patient/consumer involvement in evidence-based health care by offering principles for patient/consumer inclusion in research and dissemination. The working group convened a forum of more than 80 patient/consumer advocates, decisionmakers, regulators, and other stakeholders to examine patient/consumer inclusion in research. The report identifies examples of patient/consumer involvement in research and suggests five critical areas where they should play a role:
  • Governance and accountability (including consumers on peer review panels and institutional review boards).
  • Priority setting (involving consumers in focus groups to identify gaps in knowledge).
  • Participation in study design (requiring clinical research to include consumer-focused outcomes such as quality of life).
  • Translation and dissemination (using patients/consumers to review draft translational materials and create strategies for communicating the information).
  • Implementation (including consumers as voting members of panels that develop quality measures and pay-for-performance systems).
Community Advisory Boards in The Ryan White HIV/AIDS Program (AIDS Alliance for Children, Youth and Families, 2008) Involving consumers in designing care for patients with HIV/AIDS The Ryan White HIV/AIDS program is a Federal program that delivers HIV/AIDS care to low-income people. Part of the program includes community advisory boards (CABs), which are required in clinics funded by the program. The main purpose of a CAB is to offer providers a consumer perspective regarding policies, direct services, data management, and fiscal systems. The CAB represents the community to ensure that these activities are carried out in a way that best meets consumers’ needs. CAB members are a link between providers and the community, sharing information with the community about HIV/AIDS services and bringing community concerns and ideas back to the provider.
The AIDS Alliance for Children, Youth and Families has developed a self-assessment tool for CABs.
Comprehensive Community Mental Health Services for Children and Their Families Program (Worthington et al., 2001) Involving families in care for children with serious emotional disturbance This initiative was part of a Federal grant program to assist communities in building fully inclusive systems of care for children who are experiencing a serious emotional disturbance and their families.
Two parents of children with special needs participated as members of the research team from the design of the study to the preparation of the results. This included the review of materials distributed to families, help with recruitment, and interpretation of the results. As a result of this experience, the parents felt more empowered to advocate for their own children as well as be a voice in their community for services for all children with disabilities.
Healthy Communities Collaborative (HCC), Improvement Foundation, UK (Oldham, 2009; Slater, Knowles, and Lyon, 2008) Community engagement in reducing health care disparities The collaborative aims to:
  • Address health inequalities in areas of socio-economic disadvantage.
  • Be the catalyst for enabling communities and agencies to work together on common goals.
  • Harness the skills and knowledge in communities and use them to reduce inequalities.
  • Recognize and change poorly functioning systems using rapid improvement techniques.
The collaborative is focused on low-income groups and the needs of older people, children, and families. HCC teams are a partnership of professionals and community members, led by community members. All team members are taught improvement skills and the basics of gap analysis, process mapping, social marketing, rapid change cycles, and measurement for improvement. For example, HCC community members helped cardiac nurses identify new community locations for reaching people in need of cardiac risk assessments.
While data are not available on the impact of these initiatives, the program has been lauded for its approach. “In large system change it is essential that team composition includes individuals from other parts of the organization or other organizations, but the key team members are the patients. This approach ensures that discussions are focused on actual needs and experience, that there is less “group think” among the professionals, and that their behaviors become modified. Interdepartmental or inter-organizational petty rivalry is not played out in the presence of patients, who by their presence force attention to health care alone.”
INVOLVE, United Kingdom (INVOLVE, 2009) Involvement in national health research planning In England, an advisory organization called INVOLVE has been funded by the Department of Health to support public involvement in National Health Service (NHS), public health, and social care research. INVOLVE, which includes patients and their families as well as representatives of voluntary organizations, health and social services managers and researchers, meets four times annually to identify and prioritize research areas and advise on implementation of research and dissemination of information to the public.
Local Involvement Networks, United Kingdom (NHS, 2009) Involvement in health and social service policy Local Involvement Networks (LINks) were established through 2007 national legislation with the aim of giving the public a voice in the delivery of health and social services. LINks consist of individuals and community groups, such as faith groups and residents' associations, working together to improve health and social care services. LINks replaced an earlier structure for public engagement that called for each trust to have an advisory forum of seven patients. The forums were described as an “overly prescriptive, centralized model” (NHS, 2006). The LINks are independent of the government, run by local individuals and groups, and financed by local councils. Patients/families can be involved in LINks in different ways, ranging from answering a survey, attending meetings, participating in online group discussions, or becoming an authorized representative who visits care providers to understand their operations.
Guideline International Network Patient and Public Involvement Working Group (G-I-N PUBLIC, Boivin et al., 2010) Involvement in health care guidelines Guideline International Network (G-I-N) is a not-for-profit organization of agencies and individuals involved in the development and use of clinical practice guidelines. G-I-N created a Patient and Public Involvement Working Group (G-I-N PUBLIC) of researchers, health professionals, and consumers who promote ways to inform and involve the public in development and implementation of clinical guidelines. Members of G-I-N PUBLIC recently reported on how different organizations involved patients and the public in guideline development and identified priorities for research and international collaboration (Boivin et al., 2010). A randomized trial is under way to examine the impact of public deliberation on priority-setting for quality indicators and policymakers’ intended use of quality measures, as well as to identify factors that affect effective use of public deliberation (Boivin, 2010).

G-I-N PUBLIC also maintains an online Web forum for discussion and exchange on key issues in patient and public involvement in the development and implementation of clinical practice guidelines (http://www.g-i-n.net/working-groups/gin-public/G-I-NPUBLIC).