CONSUMER ENGAGEMENT CE AT TRG Presented by Consumer

CONSUMER ENGAGEMENT (CE) AT TRG Presented by Consumer Relations Coordinator Reachelian T Ellison Created 2011 Last update 2018 Intro version (25 min) RW Part A & B Meeting Austin, TX February 22, 2018 1

IN THIS PRESENTATION Consumer Involvement History Consumer Involvement At TRG Consumer Engagement (CE) Department What are the Contract Expectations For CE? How does TRG Measure CE? CE Best Practices What is a Consumer/Client Advisory Board (CAB)? Benefits to Consumers/Clients and Subrecipient Purpose of the CAB S-CAB Contacts CAB Best Practices TRG CRC’s Steps to Start CAB’s Subrecipient CE Evaluation Technical Assistance 2

The original information and blue print for consumer involvement at The Resource Group was developed from the following: § The Target Center § National Quality Center § HRSA Grant Guidance § DSHS Grant Guidance § AIDS Alliance for Women, Children and Families guidance on creating and maintaining a CAB. The revisions have come from consumer/client feedback, best practices over the years and the Consumer Relations Coordinator’s experience as: § A person living with HIV and interacting with Ryan White services for 16 years § A CAB Member for 3 years § A CAB Chair for 2 years § A Subrecipient Volunteer/Staff for 2 years § A CAB Monitor for 12 years; Monitoring as many as 22 agency CABs and 7 regional CABs 3

CONSUMER INVOLVEMENT HISTORY Prior to the HIV epidemic, the doctor/patient relationship was one-sided. Doctors held the knowledge which they shared with patients. Patients were expected to do what the doctor told them. § At the Second Annual Conference on AIDS in Denver Colorado in 1983, people living with AIDS from across the country met and outlined standards of empowerment which were later called “The Denver Principles” § Five of the 17 principles were important in shaping HIV policies and programs which are now known as Ryan White Programs and Services. § Four of the Advocates began what became the National Association of People Living with AIDS(NAPWA) § The formation of the local People Living with HIV/ AIDS (PLWHA) and National Association of People living with AIDS helped keep consumer involvement to the fore front of America’s response to the AIDS epidemic. § HIV services projects funded by private foundations and then federal agencies strongly encouraged consumer participation in assessing service needs for the delivery of health and support services. § The Ryan White CARE Act was named for an Indiana teenager whose courageous struggle against AIDS-related discrimination helped to educate the nation. § The focus on consumer involvement has been a integral part of the Part D of the Ryan White Act because Part D originated from services funded at the Maternal and Child Health Bureau. 4

CONSUMER INVOLVEMENT AT TRG Consumer Involvement at The Resource Group (TRG) has been renamed Consumer Engagement to reflect the broader scope of activities and initiatives the department is conducting. The Resource Group defines “Consumer Engagement” as providing consumers/clients with comprehensive education, opportunities and information to allow them to become partners in their own care. Subrecipients are expected to engage clients in participating in decision-making related to the planning, implementation, delivery, and evaluation of services they access. Compliance with this requirement is evaluated by TRG’s Consumer Relations Coordinator (CRC). Consumer/client complaints, concerns and grievances are part of consumer engagement. TRG health literacy activities/initiatives, consumer/client surveys and special projects are part of consumer engagement. Consumer Engagement is meant to encourage consumer/client participation, (ie. duties, activities, trainings, workshops, and consumer/client meetings) as partners for getting feedback for improvement. Consumer Engagement compliance is measured by reviewing the Subrecipient’s standard system, policies and procedures, setting goals, creating a work plan and producing evidence of consumer engagement activities and opportunities. 5

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CONSUMER ENGAGEMENT (CE) DEPARTMENT TRG requires that all funded Subrecipient submit a Consumer Engagement Plan that outlines how they will include consumers/clients in the design, implementation and evaluation of proposed services. § The plan will document the details of how consumers/clients are engaged in the goals, opportunities and activities for obtaining consumer/client feedback. § The plan will identify specific mechanisms to obtain consumer/client feedback and resolve client concerns related to accessing, maintaining care and services. § The agency will be expected to provide and annual update listing goals in January as a baseline. § Updates will be addressed in each quarter and establish quantifiable benchmarks to achieving the agency set goals. § Quarterly updates will include any identified or trending client concerns and how the agency has worked to resolve the concerns. § The plan will be monitored as part of the Unified Quarterly Report. § The plan will identify health literacy activities/initiatives. 7

WHAT ARE THE CONTRACT EXPECTATIONS FOR CE? As a part of the contractual relationship with TRG, Subrecipients agreed to encourage consumer/client participation in the development, implementation, delivery and evaluation of services/programs, including, but not limited to the following: A. Developing and maintaining a process or system to collect consumer/client feedback. The process or system should include but is not limited to: a Consumer/Client Advisory Board (CAB) of at least three consumers/clients who can provide feedback on a quarterly basis (required for all Subrecipients outlined in CE guidance and technical assistance). B. Develop and maintain proper evidence and documentation of consumer/client feedback including, but not limited to; a consumer/client evaluation form for all client activities and events; Routine assessment of consumer/client’s satisfaction with the delivery of service, experience in accessing the service, and health literacy level. C. Develop and maintain evidence/documentation of identified issues, barriers, and topics related to service delivery changes and improvements. 8

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HOW DOES TRG MEASURE CE? Compliance with CE requirements are evaluated by TRG’s Consumer Relations Coordinator (CRC). CE Compliance is measured by reviewing the Subrecipient’s standard system, policies and procedures, setting goals, creating a work plan, and maintaining evidence of conducting the activities outlined in the work plan. Activities should meet the federal grant requirements for consumers/clients to participate in the planning, implementation and evaluation of HIV related programs and services. Collecting consumer/client feedback plays a key role in measuring the system and process of consumer engagement. 10

CE BEST PRACTICES Consumer engagement activities for feedback are to find out what works well and what improvements can be made to address barriers to accessing care and services. Activities include but are not limited to: § Consumer/Client Assessments of both satisfaction with the delivery of service and experience in accessing the service § Consumer/Client Advocacy Boards (CAB) § Consumer/Client Education/Meetings § Consumer/Client Interviews (annual report) § Problem Resolution (PR) process (grievance/complaints) Consumer Engagement standard goals should include but are not limited to; assessing the feedback that has been collected, implementing changes to address any barriers or concerns identified and documenting how the changes have impacted programs and services. Assess consumer/client skills and interest to identify their strengths and weaknesses. Assess consumer/client level of health literacy. Skill assessments can help Subrecipients find areas/topics for training support and skill building activities. 11

WHAT IS A CONSUMER ADVISORY BOARD (CAB)? Consumers/clients are experts in service delivery. As service users, consumers/clients are well positioned to assess the quality, appropriateness, effectiveness of funded services and systems. § A Consumer/Client Advisory Board is an organized group of people living with HIV who provide feedback on the planning, implementation, delivery and evaluation of services/programs to Subrecipients, administrative agencies, state and federal funding sources. § A CAB is an element for consumer engagement. § The CAB provides a mechanism for consumers/clients to have meaningful input into the development of policies and programs that address their needs. § A CAB can keep information flowing smoothly between consumers/clients and their Subrecipient. 12

BENEFITS TO CONSUMERS AND SUBRECIPIENT The relationship between CABs and Subrecipient creates an environment that fosters the following benefits to both consumers/clients and the service providers they advise: § The development of leadership skills, transferable skills and a sense of empowerment among consumers/clients as advisors, supports the programs. § Many consumers/clients have life skills which are valuable and useful in participating in groups and meetings. Any skills and knowledge acquired through personal experience, or a talent developed and able to be used in future employment are considered transferable: Organizing/general office, meeting facilitation, public speaking, decorating/artistic skills, process development, planning, evaluation, communication, decision-making, delegation, conflict resolution, negotiation, and knowledge of Ryan White funding/services. § Maintaining a partnership between consumers/clients and Subrecipient can improve service quality, understanding service definitions, service restrictions/requirements, performing program evaluation, and focusing Subrecipient policies on consumer/client needs and concerns; § The creation of networking activities that increases consumer/client knowledge and provider sensitivity to consumer/client needs; § The development of consumer/client self-determination and independence through increased knowledge, the fellowship and support of other consumer/clients, and an environment of decreased stigma and isolation. 13

PURPOSE OF THE CAB To obtain client feedback (consumer/client input into the process/system of evaluation) To evaluate services (Find out what is working and what is not) To direct services (Find out what is needed) CAB exist on two levels through TRG. A. Project-Wide (P-CAB): participants consist of PLWHA and their affected support system who have an interest and focus on the services/programs/care over all in a specific area, region, network or project. The P-CAB will have participants from multiple Subrecipients. B. Subrecipients Specific (S-CAB): participants consist of PLWHA and their affected support system who have an interest and focus on the services/programs/care over all in a specific area, region, network or project. The S-CAB may have participant from multiple subs or may be focused on participants from one Subrecipient. 14

S-CAB CONTACTS Two essential contacts must be filled to ensure the success of Subrecipient CAB’s. The two individuals embody the goal of the CAB: effective and efficient communication between the consumers/clients and the Subrecipient that is serving them. Together, these two individuals strive to identify and support consumers/clients with leadership potential in attaining that potential. Leadership potential is the ability to understand the basic purpose of the consumer engagement and independently represent a specific population of the consumers/clients Ryan White funds. But, more so, consumers/clients with leadership potential are able to represent the needs of consumers/clients in the larger context of overall HIV planning and service delivery in their Health Service Delivery Area (HSDA). § CAB Chair/Representative § CE Coordinator/Contact 15

CAB Best Practices A. CABs that are client led have been the most successful ones. B. Clearly identify the rights, roles, responsibilities and benefits of CAB participation. C. Subrecipients should maintain and document all barriers and efforts to meet the consumer engagement requirements. § If the Subrecipient is faced with challenges in meeting the requirement there should be documentation and notification to TRG staff. § Documentation of challenges, efforts to address the challenges and quarterly updates to the CE plan can identifying new efforts to meet the TRG CE requirements. § TRG staff is available for technical assistance if needed. 16

TRG CRC’s Steps to Start CAB’s 1. Read over the materials to understand the TRG process and goals. 2. Create a timeline for establishing a CAB. Timelines set with quarterly benchmarks work best. 3. Identify consumers/clients to help reach the CE goals. Start with as few as 3 clients. A good foundation will depend on quality not quantity. Treat consumers/clients as partners and word of mouth will be the best method of advertising and recruiting new members. 4. Talk to consumers/clients about a quarterly commitment to provide feedback about your program and service. 5. Involve consumers/clients to help secure a location for the meeting. (They may know of a space you don’t or have not thought about. ) 6. Educate consumers/clients on the services and program they will review. Make policies and procedures (P&P) to support consumer engagement goals (CE). 7. One of the first task of the CAB can be to let consumers/clients review Subrecipient CE P&P. Get documented feedback. 8. Submit the P&P to TRG for review, guidance and approval. 9. Train Subrecipient staff on the CE P&P. 10. The 1 st meeting happens by the end of 3 months and a 2 nd by the end of 6 month to achieve compliance. 17

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SUBRECIPIENT CE EVALUATION There are existing compliance forms to evaluate the Subrecipient’s consumer engagement process. CE compliance is ongoing and reported on a monthly, quarterly and annual basis within the funded year. There is a single form to evaluate the Subrecipient CE program as whole annually. The form contains a section to evaluate the Subrecipient CAB. The form is based on best practices developed through the Ryan White Funded Programs of TRG’s evaluation process, standards and expectations. Technical Assistance (TA) is offered, recommended and available up on request. TRG offers a list of key CE department trainings/presentations with overview of each training. All TA trainings or can be tailored or modified based time limitations upon request. an presentations on audience and 19

TECHNICAL ASSISTANCE Any questions or concerns related to consumer engagement compliance Contact the Consumer Relations Coordinator at (713) 526 -1016 x 104 Written request can be submitted by email rellison@hivtrg. org or Fax (713) 526 -2369 or Text at (832) 533 -0743 20