Consumer Input – a need, a desire, a necessity Rich Fowler, Consumer & Community Relations Manager USCA – September 12 th, 2015.

Consumer Input – a need, a desire, a necessity

Rich Fowler, Consumer & Community Relations Manager

USCA – September 12th, 2015

Trillium Health has been providing comprehensive, integrated,

personalized primary and specialty medical care to people from the Greater Rochester, Finger Lakes, and Southern Tier regions of New

York State for 30 years.

While staying true to our pioneering HIV/AIDS treatment and prevention services, we have expanded on that innovative model of care so that we are now welcoming ALL patients that want to experience comprehensive care in a supportive, healing environment.

Trillium Health combines primary and specialty medical care, care management, behavioral wellness, pharmacy and lab, and supportive services such as adult day health all under one roof, providing a seamless experience for our patients and clients.

We add a unique element to the way we deliver care through comprehensive services and meeting individuals where they are through community outreach and education.

Primary CareHIV & Hep C Specialty CareLGBT Health and Supportive ServicesCare Management & Health HomesBehavioral WellnessTreatment Adherence Nutrition & Food PantryPharmacy ServicesAdult Day HealthHarm Reduction

Rich Fowler has been Trillium Health since 1995 in various roles and now holds the position of Consumer and Community Relations Manager.

Rich offers a direct consumer perspective to agency Leadership while representing the interests of people living with HIV and AIDS on local, regional, and state levels.

Objectives

A history of consumer involvementTools to evaluate involvement Methods to improve consumer inclusionConsidering strategiesNext steps

We should all be aware of the ever-changing landscape of healthcare and supportive services agencies.

The Affordable Care ActRyan White Reauthorization Medicaid ReformICD-10

As we prepare for the challenges of meeting

these changes, the consumer voice is more important now than ever

before.

The HIV/AIDS community has been a historic leader in ensuring

that the consumer voice is not only heard loud and clear but that those

hearing us are paying attention to what we are saying.

1983 – at the National Lesbian and Gay Health Conference in Denver, CO, PWA from several cities founded the National Association of People with AIDS and adopt the Denver Principles, which define self-empowerment.

1987 – AIDS Coalition to Unleash Power (ACT UP) established in New York to end the AIDS crisis through “nonviolent direct action” Their first “protest” focusing on the cost of drugs blocked Wall Street.

Compiled from Cicatelli Associates, Inc., AIDS.gov and the Kaiser Family Foundation

1990 – PWA protest at the Center for Disease Control demanding expansion of the definition of AIDS to include diseases specific to women, people of color and children. Also the beginning of the Ryan White CARE Act (bill authorizes $881 million while Congress only appropriates $350 million).

1992 – Bill Clinton meets with members of ACT UP and United for AIDS to discuss his AIDS policy. The Democratic Convention has 2 HIV+ speakers, and the Republican 1.

Compiled from Cicatelli Associates, Inc., AIDS.gov and the Kaiser Family Foundation

1995 – President Clinton establishes Presidential Advisory Council on HIV/AIDS.

2000 - UNAIDS, WHO and other global health groups announce joint initiative with five major pharmaceutical manufacturers to negotiate reduced prices for AIDS drugs in developing countries.

2004 - The Global Fund to Fight AIDS, Tuberculosis, and Malaria holds first ever "Partnership Forum," in Bangkok, Thailand; 400 delegates participate.

Compiled from Cicatelli Associates, Inc., AIDS.gov and the Kaiser Family Foundation

2009 - Newly elected President Obama calls for the first ever National HIV/AIDS Strategy for the United States.

2010 - Obama Administration releases first comprehensive National HIV/AIDS Strategy for the United States in July.

Today – Here we are at USCA 2015

Compiled from Cicatelli Associates, Inc., AIDS.gov and the Kaiser Family Foundation

Whether it is by legislators, policy makers, service providers or others, we

continue to strive to be sure that our input in considered

in the decision making process.

Now is the time we must guarantee that the voice of those living with HIV/AIDS is sought out and included in care change strategies.

As those who have or are seeking FQHC status are aware consumer involvement is a one of the robust requirements your agency must uphold.

– This is evidenced by the need to maintain a minimum of 50% consumer membership on your board of directors.

In the days of Ryan White CARE Networks regulations required that each region be represented by a consumer advisory group.

Today most agencies receiving Ryan White or other state and federal HIV/AIDS funding are required to report consumer involvement in their management process.

This representation of service recipients can be achieved in many ways.

ASSESSING CONSUMER INVOLVEMENT

Organizational Quality Assessment Tool

Defined as:

Consumer Involvement  

GOAL: This section assesses the extent to which consumer involvement is formally integrated into the quality management program.  

Consumer Involvement encompasses the diversity of individuals using HIV programmatic services and can be achieved in multiple ways including solicitation of consumer perspectives through focus groups, key informant interviews and satisfaction surveys; a formal consumer advisory board that is actively engaged in improvement work; consumers as members of program committees and boards; and conducting consumer needs assessments and including consumers in specific QI initiatives. Ideally, consumers have a venue to identify improvement concerns and are integrated into the process to find solutions and develop improvement strategies. Overall, consumers are considered valued members of the program, where consumer perspectives are solicited, information is used for performance improvement and feedback is provided to consumers.

Five Levels

http://nationalqualitycenter.org/index.cfm/5659 - PDF: Part C and D OA rev 1

Strive for 5Contribution and its impact on quality is

reviewed with consumers.

Is part of a formal, well-documented process for consumers to participate in HIV quality management program activities, including a consumer advisory committee with regular meetings, consumer surveys, interviews, focus groups and consumer training/skills building.

In quality improvement activities includes four or more of the following: sharing performance data and discussing quality

during consumer advisory board meetings membership on the internal quality

management team or committee training on quality management principles and

methodologies engagement to make recommendations based

on performance data results increasing documentation of recommendations

by consumers to implement quality improvement projects.

Information gathered through the above noted activities is documented, assessed and used to drive QI projects and establish priorities for improvement.

Includes work with program staff to review changes made based on recommendations received with opportunities to offer refinements for improvements. Information is gathered in this process and used to improve the quality of care.

Involves at minimum, an annual review by the quality management team/committee of successes and challenges of consumer involvement in quality management program activities to foster and enhance collaboration between consumers and providers engaged in quality improvement.

Tools & Tactics:

Surveys CABs Staff Board of Directors Feedback

Surveys

Patient Satisfaction Survey

AnnualProgram or Service SpecificPoint of ServiceCustomComparative

Conducted at least once a year

Organization, Funder or Regulatory requirement designed

Recognized Methodology

Allows national benchmarking and program comparison

Developed by HRSA BPHC by the MidWest Clinicians’ Network to comply with PMHC requirements.

Annual Satisfaction Survey

General, Program Specific , Ad Hoc

Developed for a specific purpose

Generally short, simple questions

Results may be used in developing quality or process improvement, or program enhancements

Consumer Lens

Consumer Advisory Boards

Advisory Boards are a place where there is a healthy exchange of information, ideas, and suggestions that might be used by the Administrators and/or a Board of Directors in decision making.

Trillium Health Consumer CouncilComprised of patients, clients and caregivers

Meets monthly following a standardized agenda that includes regular updates on programing, quality improvement activities and allows time open discussion.

Consumer Council

Average monthly attendance includes 15 to 20 consumers.A monthly mailing, including meeting minutes, reaches over 120 agency service recipients. Led by an elected chair, co-chair and secretary. Support from a staff liaison and a designated member from the board of directors.

Staff MembersPatients & Clients as Staff

Dedicated Consumer Advocate & Voice

Trillium Health employs a full-time Consumer and Community Relations Manager to provide direct consumer input, promote and sustain patient and client involvement and serve as an internal consultant to assist with emerging consumer concerns. This individual acts as liaison to the consumer council, is a member of the agency management team and actively participates in local, regional and State HIV/AIDS forums providing a bi-directional means of communication to agency leadership.

Focus Groups

Another avenue of securing consumer input is through focus groups or polling members of existing support and/or educational groups.

This technique is valuable in soliciting feedback on a specific topic, community needs, or may be used to evaluate the success of that group or the associated department or program.

Community Partners

Agency participation and/or representation throughout the community allows you to gain valuable information from a wide range of sources.

HIV/AIDS Provider Consortiums

Provider Groups, i.e. County Medical Associations

Regional or State Planning Bodies

Board of Directors

Additional consumer participation in planning and development of new programs, feedback on existing services and identifying consumer needs include diverse consumer representation on the Trillium Health Board of Directors, and the participation of consumer council members on Board’s quality committee and in process improvement workgroups.

FeedbackThe quickest and easiest way to get input from your consumers may be through simple feedback. This can be structured or informal; written, electronic or verbal.

Questions at Checkout One Minute MeasuresComment CardsSurvey MonkeyKiosks

Keep it simple: Short and Sweet

This multi-faceted approach to including the consumer perspective in upholding our mission, striving to reach our vision and providing quality services has

served us well.

Your Charge:To consider a new strategy and commit to engaging greater consumer involvement in your future planning or quality improvement activities.

Contact & ResourcesTrillium Health – www.TrilliumHealth.org

New York State DOH, AIDS Institute – www.hivguidelines.org

or www.health.ny.gov/diseases/aids/

National Quality Center – www.nationalqualitycenter.org/

Rich Fowler, Consumer & Community Relations259 Monroe Ave., Suite 100,

Rochester, NY [email protected]

585-210-4129

Questions

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Answers