Guide for Developing a Community-Based Patient Safety Advisory Council
Step 1—Determine the Scope of the Council
The first steps in creating a patient advisory council are often the toughest. The concept of bringing patients to the table as part of the team can be intimidating to health care providers, and patients feel the same way. Organizing your project according to the steps identified in this guide will help the process go smoothly. However, don't let the planning prevent you from moving forward. At some point, you need to take that first step, and soon after you will see the benefits of partnering with your patients.
What: Define the Council's Goals and Objectives
Organizations that are just beginning to bring patients to the table should start with a small, narrowly focused project. This gives both providers and patients a chance to become familiar with a partnership collaboration, work out logistics, and introduce the concept to organizational leaders. A small, successful project creates the confidence to move toward a larger council with broader goals.
Even with larger councils, it is important to continually reinforce the focus on the goals and objectives established at the beginning of the project. To do that, organizations should:
- Select a specific process or aspect of care that is focused and clear.
- Conduct a patient focus group to identify the primary safety concerns of the organization's target audience.
- Conduct a staff focus group to identify the primary safety concerns of the organization's staff.
- Select a topic the organization has addressed but has not successfully resolved.
- Identify a safety concern from data and metrics available in the organization.
- Define objectives that are achievable and measurable within the project parameters.
- Focus on a particular site in which the process or aspect of care occurs, e.g., hospital-based, outpatient clinic, retail pharmacy, home, or another site.
- Select a target population to be the focus of the project goals.
- Select specific goals and objectives for the council to address.
Go to Appendix A for an example of project goals and objectives.
How: Define the Council's Parameters
The council's limitations and restrictions should be clearly established and defined for its members. Parameters that should be defined include:
- Timeframe. A specific timeframe should be developed and followed to keep the council moving forward. For teams that are just beginning to initiate patient involvement, the project timeframe should be kept very short, e.g., less than 6 months.
- Budget. Financial resources available for the council and its project should be clear. In addition to the sponsoring health care organization's providing financial support for the project, other organizations, including vendors, pharmaceutical companies, and product manufacturers, may wish to lend support as well. However, these other sources of support may have restrictions or associated requirements. For example, if a vendor or manufacturer is willing to provide financial support or contribute products, it may control the rights for advertising or insist that its logo be displayed on the final products. The project team should decide initially from what sources they are willing or legally able to accept support, either financial or otherwise.
- Organizational support. In addition to financial support, the organization may provide other resources, including staff time, meeting rooms, and office supplies.
- Technology. The availability and capability of technology support for the council, as well as the project, should be defined.
- Meeting logistics. Time, place, frequency, and length of meetings, and total duration of the project period should be established.
- Roles and responsibilities of team members.
- Evaluation and outcome measurements. Data collection methods and the analysis plan should be included.
- Scope of project. Clarify what the council will not be addressing.
Who: Define Council Membership
A patient advisory council should be a multidisciplinary team and include representation from the targeted patient population and the providers who care for these patients. Overall elements to keep in mind include:
Council size. Start small. If this is the first project that includes patients, consider including just a few (e.g., less than five) patients on the team. A larger council may be established after staff members are comfortable with the process of working collaboratively with patients on a project team. Patient advisory councils should be kept to 20 total members. This size allows for diverse representation but is small enough for effective communication and consensus development.
- Council membership. At least half of the council's members should be patients. This allows for equal representation of patient and provider perspective. Patients feel more comfortable sharing when there are other patients present and when they are not outnumbered by providers. To create a diverse patient membership for the council, consider patients' ages, genders, medical conditions, and cultural or racial backgrounds.
Health care providers and community members comprise the remaining membership of the council. Representatives from the following groups may be considered:
- Caregivers who provide primary assistance to patients in their homes.
- Physicians, including primary care providers and consultants.
- Ancillary service staff, including insurance benefits specialists and parish nurses.
Step 2—Select the Team
The membership of the council is critical to successfully building a partnership between providers and patients. The roles of the council members in this project should be explicit. Recommended members, their key characteristics, and their specific roles and responsibilities follow.
Patient members on the council provide the consumer perspective to the project goal. They do this through sharing their own opinions and expertise as well as experiential knowledge from personal, family member, or friends' encounters with the health care issue being addressed. Key characteristics of the patient representative include:
- Good communication skills.
- The ability to collaborate with diverse individuals in a group setting.
- Representation of the consumer base in which the council exists, including cultural, racial, or ethnic communities.
- Firsthand knowledge of the topic at hand. For example, if the council represents a group of clinics, patient representatives should receive care from one of the clinics. If the focus is on a clinical condition, patient representatives should either have the condition or have family members who have it.
Roles and responsibilities of the patient representative include:
- A focus on the specific project goals and objectives.
- Commitment to improving care related to the project goals.
- The ability to maintain confidentiality.
- A willingness to communicate relevant information with family, friends, and the community to contribute to the successful achievement of the project goals and objectives.
Recruiting patients is often the most intimidating step of establishing an advisory council. Remembering that patients are friends, neighbors, community members, and sometimes family keeps this in perspective. To successfully recruit potential consumer council members:
- Obtain referrals from health care providers. The project coordinator and on-site leads, both of which are described below, should talk with staff about the council project, describe the eligibility criteria, and ask staff to make recommendations from their patient population.
- Establish initial contact with the patient through their health care provider (physician, nurse, or pharmacist). A direct request from the provider demonstrates to the patient that his or her participation and opinion is valued. The initial call is to request participation and to obtain permission to have the project coordinator contact the patient with additional details.
- Provide followup by having the project coordinator call patients who agree to learn more about the project. This interview should provide specifics on the project, including roles and responsibilities of the patient representatives on the council. Sufficient time, up to 1 week, should be allowed for patients to consider the opportunity to participate.
Health Care Providers
A range of providers should participate to represent the complete health care team. Depending on the scope of the council project, representatives may include doctors, nurses, pharmacists, social workers, and parish nurses. A key component of a provider representative is willingness to work collaboratively with patients and other disciplines. Health care provider representatives on the council should be accepting of collaboration in a patient-centered care model.
The project lead is the coach of the team. He or she develops the project concept, acquires the necessary funding and organizational support, selects the project coordinator, and manages the entire project. Key characteristics for a project lead include:
- A leadership position in the organization.
- Expertise with the content of the project goal and objectives.
- Time available to devote to the project.
- Communication skills to work comfortably with a diverse group of organizational leaders, professionals, patients, and community members.
- Knowledge of project evaluation and data analysis.
Project lead roles and responsibilities include:
- Developing project goals and objectives.
- Defining the council's role in the organization and in relation to the project goals and objectives.
- Obtaining organizational support for the council and project.
- Acquiring financial support for the council and project.
- Recruiting, orienting, and supervising the project coordinator.
- Being a member of the council and participating in meetings.
- Participating in project activities.
- Overseeing project evaluation and data analysis.
- Ensuring the project is completed on time.
- Committing 1 to 5 hours a week, depending on the size of the project.
A critical person for successful implementation of a patient advisory council, the project coordinator is responsible for the day-to-day management of the council and its activities. The project coordinator should be the first staff member identified and engaged in the project. A project coordinator should be:
- A personable individual with excellent communication skills who is sensitive to individual council member needs; respects diversity; is able to interact with different personalities and professions; and is able to build a team based on trust, honesty, and respect.
- Connected to the community. For an outpatient-based council, the project coordinator must have established relations with community organizations. This helps build trust with council members and facilitates the introduction of the project into other community groups.
- A member of the project site staff. Depending on what site (hospital, clinic, pharmacy) the council represents, the project coordinator should be a staff member of that facility. The project coordinator's established relationships and trust with staff will facilitate staff engagement in and adoption of the council concept.
- Committed to the council project. The project coordinator needs to have sufficient time devoted to the project.
Project coordinator roles and responsibilities include:
- Working directly with the project lead.
- Recruiting and orienting staff members.
- Recruiting and orienting council members.
- Serving as the primary liaison to the council members; providing communication with council members via individual communications, meeting agendas and minutes; and addressing individual concerns or needs.
- Chairing all council meetings.
- Communicating with internal staff and leaders by attending department and staff meetings, individual meetings, and presentations.
- Working with external community organizations through communications, meetings, and presentations.
- Coordinating and participating in public relations and media activities, including press releases, media presentations, and public events.
- Developing and implementing project strategies and interventions in conjunction with other team members.
- Monitoring the project budget.
- Monitoring the quality of the project.
- Committing 5 to 20 hours per week, depending on the size of the project.
If a council activity involves a site that includes physicians, a physician champion is an important staff member to identify. A physician champion should:
- Be a recognized leader among staff physicians, though he or she may not necessarily hold a formal title.
- Be a respected physician who works directly with the physician staff and has a vested interest in the work of the council.
- Understand and support the project.
- Be recruited at the earliest stage of the project, prior to the council being established.
- Be able to attend most council meetings. Another physician should be identified who can alternate with the physician champion at council meetings to ensure the physician perspective is represented.
Roles and responsibilities for a physician champion include:
- Encouraging other physicians to participate in the council and their activities.
- Leading other physicians to adopt patient-centered care.
- Representing the council and the physician group at professional meetings and public relations events.
- Providing the physician perspective to the council and project goals.
- Being a member of the council and participating in meetings.
- Communicating with other physicians about the council and their activities.
- Committing 1 hour per week to the project.
On-Site Staff Leads
Staff leads are the primary points of contact at the work site. If the council is representing more than multiple clinics or hospitals, each site should have an on-site lead. Staff leads may also represent a discipline or profession, e.g., nurse lead or physician lead. On-site staff leads should:
- Hold a leadership position, such as supervisor or manager, at their site.
- Have excellent communication with all staff and professions at their site.
- Be able to work and communicate effectively with the project coordinator.
Roles and responsibilities for the on-site staff lead include:
- Serving as the point of contact for project coordinator and project leader at their work site.
- Communicating with other staff at their site, providing updates on council activities and the project, collecting information from staff to share with the project coordinator, and identifying site-based barriers and opportunities for the project.
- Participating in recruiting council members.
- Serving as a member of the council by participating in meetings.
- Committing 1 to 2 hours per week, depending on the size of the project.
Other Health Care Providers
Depending on the project goals and objectives, other health care providers may need to be included on the council. For example, if the project addresses medication issues in the outpatient setting, a retail pharmacist should be included. If the project focuses on health care services provided in the home, a home health nurse should be a council member.
Community members may represent a community-based organization that includes patients and providers in a separate component of care. Including community representatives broadens the scope of perspectives beyond the traditional one-on-one health care relationship between patient and doctor. The inclusion of other community members recognizes the role community organizations play in the health of an individual as well as a community. Community representatives may not be necessary for a small project or an organization's initial effort to involve patients. Examples of community organizations to consider for representation in the council include:
- Community-based organizations, such as Kiwanis, Rotary Club, Lions, Elks.
- Local government health and social service programs.
- Social service agencies.
- Community meal sites.
- Senior apartments.
- Women's clubs.
- Social clubs.
- Public libraries.
Community representatives should:
- Represent a community organization that is a stakeholder in the project goal or represent a community organization that has significant membership from patients and providers who are affected by the project goals and objectives.
- Be willing to exchange information between council and their community organization.
- Accept the concept of collaboration among diverse participants.
Roles and responsibilities for a community representative include:
- Focusing the work on the specific project goals and objectives.
- Committing to improving care within the community related to the specific project goals.
- Maintaining confidentiality.
- Communicating and sharing relevant information between the council and the community.
- Committing 1 to 2 hours per month, depending on the size of the project.
Step 3—Determine a Budget
Establishing a patient advisory council does not require significant funds. Many small projects can be completed with minimal staff time, voluntary patient representatives, and use of existing facilities and supplies. However, an organization that wants to establish a larger council, both in members and role, may need to commit resources to ensure its success. Go to Table 1 for suggested annual budgets.
Table 1. Suggested Annual Budget
|Category||Item||Est. Cost per Item||Quantity/Frequency|
|Patient Representatives||Stipend per meeting||$25-100||Team specific|
|Staff||Project lead||Hourly salary||1-5 hrs/week|
|Project coordinator||Hourly salary||5-20 hrs/week|
|Physician champion||Hourly salary||1 hr/week|
|On-site lead||Hourly salary||1-2 hrs/week|
|Other health care Hourly salary 1 hr/week providers||Hourly salary||1 hr/week|
|Meetings||Room rental fee||Site specific|
|Supplies (binders, paper, pens)||Site specific|
|Community Awareness||Printed brochures and pamphlets||$.10||Quantity of 12,000|
Step 4—Confirm Team Members
Each person who agrees to participate on the council should complete an application form and sign a confidentiality statement. The application should provide eligibility criteria for and details on council membership. Go to Appendix B for a sample application form. The form should include at a minimum:
- A description of project, goals, and objectives.
- The criteria for membership.
- The responsibilities and roles of members.
- Time commitment expected for project completion.
- Supportive services.
- The specific participation requirements that vary for patients, health care providers, and community member representatives.
The confidentiality statement should comply with Health Insurance Portability and Accountability Act, or HIPAA, requirements. The form that hospital volunteers sign can serve as a template for the confidentiality statement. The organization's compliance officer should review the any confidentiality statement council members will be asked to sign. Go to Appendix C for a sample confidentiality statement.
Step 5—Conduct the Orientation Meeting
Because of the sensitivity of both patients and providers in participating in this new model, all council members should receive orientation. For a small project that includes a few patients on a team, the orientation can occur with one-on-one discussions at the first meeting. For larger councils with broader goals and objectives, 1 to 1½ days should be devoted to orientation.
The focus of the orientation for small or large projects is to ensure that both patients and providers understand the process of collaboration as well as the specific project goals. Potential barriers for a successful collaboration between patients and providers should be addressed at the initial meeting. Go to Tables 2 and 3 for barriers that meeting planners should consider and actions that can be taken to remedy the barriers.
Holding the meeting in a special location, such as a hotel meeting room or conference center rather a hospital's meeting room, provides an atmosphere of excitement and attention to the importance of the council. A facilitator or outside speaker may help lead the council, especially if no one has previously participated in a collaboration with patients and providers. An outside speaker who has experience in consumer advocacy can relate the importance of the project.
The orientation meeting can also be a forum to build rapport and trust among council members. Sharing personal experiences related to the project goal helps create an environment of trust, and ice-breaker exercises that have patients and providers working together can initiate relationship building.
For a long-term council with a broad assignment, developing vision and mission statements as a team can be a constructive process of team building. The vision statement describes how the council views the ideal future for the health care system. The mission statement describes the primary objective of what the council is trying to achieve as an organization. See Appendix D for a sample mission and vision statement document.
Table 2. Patient Barriers to Successful Collaborative Meetings
|Potential Patient Barriers||Recommended Actions|
|Concerns about damaging their relationships with health care providers if their comments are negative.||
|Concerns that their opinion may not be valued or respected||
|Unfamiliarity with health care systems and the medical world; belief that they do not have enough medical knowledge to participate constructively.||
|Logistical complications limiting their availability to participate in meetings.||
|Concerns about being active participants and contributors.||
Table 3. Provider Barriers to Successful Collaborative Meetings
|Potential Patient Barriers||Recommended Actions|
|Concerns about revealing problems and mistakes in the system with their patients.||
|Concerns that patients will use the council as an opportunity to vent complaints.||
|Concerns that a small number of patients will not be representative of all patients, including their own.||
|Cost of project.||
|Inexperience with patient collaboration models.||
|Concerns about negative repercussions—legal or otherwise—on the staff and organization.||
Step 6—Conduct Regular Council Meetings
Organization, planning, and preparation are key elements of an effective council meeting.
- Define the ground rules, which should include respect and honesty, to set the tone for all meetings. Go to Appendix E for sample ground rules.
- Honor the ground rules, using the facilitator to ensure they are followed.
- Speak in nonmedical terminology.
- Agree to address all council members in the same manner (i.e., by their first names) to avoid an authority gradient between patients and providers.
- Meeting times. Set meeting times so they are convenient for members. Consider any special needs council members have. For example, older patient representatives may prefer meetings to be held during daylight.
- Location. Set a meeting location that is centrally located for all council members. If there are political or community issues that could influence the council, consider a neutral location where all members are comfortable. This may be in a location that is not owned by the sponsoring health care organization. Meeting in a community-based organization's site may demonstrate community involvement in the project.
- Project commitment. Define the time commitment of the project, such as number, frequency, and duration of meetings, and the duration of project period. Meetings that are too long may not be productive. A specific project period keeps the council committed to completing its objectives within a defined timeframe. Meetings that are held less often than every month may lead to a loss of enthusiasm for the project. Months with multiple holidays may cause scheduling conflicts for council participants; consider not holding meetings during those months.
- Stipends. A stipend may be offered to council members for their time and effort. Patients often do not accept the stipend, but the offer of one reflects the value that an organization puts on their contributions to the project. A stipend may range from $25 to $100, depending on available resources, duration of meetings, and length of the project.
- Support services. Detail the services that will be offered for council meeting participation, such as food, childcare, transportation, and parking.
- Room setup. Arranging tables and chairs in a circle is most conducive to discussion and visually associated with no hierarchical relationship among the team members.
- Binders. Provide each council member a binder to maintain their materials. Include a list of members' names and contact information (after getting approval from the members to share this information); the project coordinator's contact information; a description of the project mission, including the vision, goals, and objectives; and the minutes from the last meeting.
|Aurora Health Care Project
Frequency: Monthly meetings
Duration of meetings: 3 hours (includes 15-minute breaks)
Support services: Free parking; muffins, coffee, and water provided; financial stipend for patient representatives
Meeting time: 9 a.m. to noon (daylight driving)
Location: Local health department meeting room (neutral location, centrally located within the community)
Project period: 2 years
Standing Agenda Items
Regular agenda items that facilitate an organized project completion and build trust among the members include:
- Check in. At the beginning of every meeting, ask council members if they have a story to share that is related to the project goal. This may include a demonstration of the problem being addressed, a suggested intervention, or a celebration of a success that is attributed to the council's efforts.
- Check out. At the close of every meeting, ask each council member how he or she felt about the meeting. Did they learn something? What was most interesting? What could have been done differently? How do they feel the council is doing toward meeting its goals and objectives?
- Meeting evaluations. Each council member should be asked to complete an evaluation after each meeting. Share the results of these evaluations at every meeting. If evaluations address specific concerns or recommendations, take action to incorporate changes at the subsequent meetings. Go to Appendix F for a sample meeting evaluation.
Assignments and Homework
Council members should receive assignments when appropriate. Assignments help to get tasks done in a timely manner by spreading the work, and they also give members a sense of participation in and ownership of the project.
Use the expertise and connections of the council members. For example, if one of the council members belongs to a community organization, ask him or her to introduce the project to fellow members or to invite the project coordinator to the organization's next meeting.
Continuing education is especially important at the beginning of council development. This may include sharing written materials, articles, and professional literature. Presentations by experts from within and outside the organization provide diverse perspectives on the project goals.
Step 7—Elicit Public Relations Support and Community Engagement
Public relations and marketing may be beneficial, especially for projects that involve community members and organizations beyond the health care system. Raising awareness in the community that the council exists highlights the organization's commitment to patient-centered care and meeting the needs of consumers. Community engagement may be a powerful mechanism for promoting and achieving behavior-based healthy outcomes. By collaborating with community-based organizations, consistent education and best practices can be shared with those who provide patient care. Although the primary objective for a health care system may be to take care of their own patients, the impact from a project may reach beyond those individuals and positively affect the health of the larger community.
Recommended public relations and community engagement strategies include:
- Creating a brochure that explains the council's role and goals. A sample brochure can be found at Appendix G.
- Using advertisements to promote a project or intervention. A sample of an advertisement can be found at Appendix H.
- Media reports through newspapers, radio programs, and television spots to spread the word to and beyond the community. Holding a media event, at which reporters are invited to attend part of a council meeting and interview patient and provider representatives, can further enhance community awareness and engagement.
- Engaging a photographer to document the work—and the fun—the group had in achieving success.
- Communicating with the internal organization through newsletters, Email, and presentations at committee and staff meetings.
- Keeping the board of directors aware of the project by addressing some of the barriers and concerns as well as opportunities for the organization.
- Engaging local government to heighten awareness among community members. A presentation to the local board of supervisors can be made. Participating in annual Patient Safety Awareness Week activities connects the council's efforts to national programs.
- Accessing community groups and social service agencies through council members who are active in these organizations. These groups may provide perspective on the project goals and assist in dissemination of the interventions.
Step 8—Conclude With a Meeting
At the conclusion of the project time period, the council should evaluate its progress on the project and reflect on the council itself. A final meeting should be devoted to evaluation, reflection, conclusions, and recommendations for the future role of the council. Components of the final meeting may include:
- Review of the council's history from initial planning through implementation.
- Report to the council on project goals, measured outcomes, and evaluation metrics.
- Reiteration of the council's purpose: Bringing patients into the organization's infrastructure and moving toward a more patient-centered approach to health care.
- Identification of barriers and opportunities for continuation and replication of the council.
- Celebration of successes, even if project goals were not entirely met.
- Recognition of council members and their efforts from organizational and community leadership.
- Completion of the final report for organizational leadership with recommendations for continuation or replication.
Step 9—Measure Success
Several evaluation methods can be used to quantify the success of a council. Both process and outcome measures can demonstrate how the organization has met its goals for involving patients.
Suggested process measures include:
- Number of project teams that include patients as team members.
- Number of patients that have been included on project teams.
- Number of meetings in which patients participated.
- Number of patient advisory councils an organization established.
- Number of patients on the patient advisory councils.
- Number of meetings of the patient advisory council in which patients have participated.
- Number of focus groups conducted.
- Number of patient and provider interviews completed.
- Number of interventions, tools, and materials created by the council to meet the project goals and objectives.
- Number of interventions, tools, and materials disseminated to patients and the community to meet the project goals and objectives.
Suggested outcome measures include:
- Evaluation scores from each patient advisory council meeting that meet or exceed the target.
- Meeting or exceeding specific project goals and objectives.
- Impact of project on patient behaviors and practices, measured through surveys (mail, phone, or Email), observational studies (at clinics, pharmacies, or hospitals), and chart reviews.
- Penetration of project impact beyond targeted population (community penetration beyond the organization's patient population), measured through surveys (mail, phone, or Email).
- Patient satisfaction survey results meet or exceed target.
- Employee satisfaction survey results meet or exceed target.
Go to Appendix I for measurement examples.
Step 10—Sustain the Partnership Model
The initial excitement and passion generated by the collaboration between patients and providers can dissipate over time and with the practicality of completing a project. Although council members often feel changed by working in a partnership model, others in the organization may not experience an emotional response. Therefore, both the council members and the organization may lose the enthusiasm needed to continue and promote replication after a project has been completed.
Steps to continue cultural transformation toward patient involvement include:
- Inviting key organizational leaders to a council meeting.
- Including one or more of the patients from the council on a different project. With their experience and comfort, these patients can demonstrate to other staff how effective their involvement can be.
- Sharing the experience with other providers and staff at meetings and conferences. Council members, with a patient representative, if possible, should make the presentations.
- Obtaining funding from "nontraditional" sources, such as grants, foundations, and affiliated groups of the health care organization.
- Replicating patient involvement in small projects throughout the organization, allowing other staff to experience the benefits of working collaboratively with patients.
- Reporting on the successes of the council's efforts to organizational leadership.