PR HIV Planning Group Meeting Implementing Comprehensive HIV Prevention Planning

Capacity Building

Puerto Rico HIV Planning Group Meeting Implementing Comprehensive HIV Prevention Planning and Stakeholder Engagement Process May 22-23, 2013 Technical Assistance Report

www.HealthHIV.org

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MAY 2013 TECHNICAL ASSISTANCE Summary of the Technical Assistance Process In April 2013, HealthHIV began a technical assistance process to inform and support the Puerto Rico Department of Health and the Puerto Rico HIV Planning Group (HPG) as they implement a comprehensive HIV prevention planning and community stakeholder engagement process as required under the Centers for Disease Control and Prevention (CDC) funding PS12-1201: Comprehensive HIV Prevention Programs for Health Departmentsi (PS12-1201).

HealthHIV responded to a CRIS (CBA Request Information System)!request from the health department on March 22, 2013 and convened a phone call on April 2, 2013, with representatives to confirm the technical assistance (TA) need and to discuss the development of an action plan. The health department was seeking technical assistance in facilitating and guiding a process of defining the criteria for HIV Planning Group (HPG) members and broad stakeholders in HIV planning, and determining an HPG structure that responds to PS12-1201 and the newest CDC HIV Planning Guidanceii.

HealthHIV requested documentation from the health department in order to develop a TA action plan. This included the Puerto Rico HIV Prevention Plan (jurisdictional plan), HPG membership roster and meeting attendance, membership profile forms, HPG bylaws, and the Puerto Rico stakeholder engagement plan. Prior to developing the TA action plan, HealthHIV also conducted phone conversations the with CDC Project Officer to Puerto Rico and conducted independent interviews with the HPG co-chairs to discuss functionality of HPG process and protocols, and areas of sensitivity with the group.

HealthHIV recognized the need to address successes and challenges of the HPG, as well as review PS12-1201 requirements; CDC HIV Planning Guidance basics; roles and responsibilities in HIV planning; and the process and models for broad stakeholder engagement. HealthHIV worked with the health department and CDC Project Officer to develop an invitation (see Appendix A) and agenda (see Appendix B), which were distributed to the 25 HPG members by email from the health department.

On May 21, 2013, HealthHIV met in-person, at the Puerto Rico Department of Health with HPG co-chairs and health department representatives to review TA delivery methods; roles and responsibilities in the TA delivery; and meeting goal, objectives, and expectations. HealthHIV would act as a trainer and third-party facilitator over the next two days.

The report that follows was developed by HealthHIV as a summary of the technical assistance provided to the Puerto Rico Department of Health on May 22-23, 2013.

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TECHNICAL ASSISTANCE MEETING Day One— Tuesday, May 22, 2013 On Tuesday, May 22, HealthHIV began a two-day meeting facilitation with the Puerto Rico HIV Planning Group (HPG) and community stakeholders in San Juan, Puerto Rico.

HealthHIV worked with the Puerto Rico Department of Health and the HPG to develop a method to train and educate HPG members and community stakeholders around the implementation of the 2012 CDC HIV Planning Guidance.

The Puerto Rico Department of Health sent invitations via email to 25 members of the Puerto Rico HPG to participate in the two-day meeting. Of the 25 invitees, 15 HPG members attended the meeting on Wednesday, May 22nd and 13 attended the meeting on Thursday, May 23rd (See Appendix B for list of attendees). The participants represented various sectors such as social support services, people living with HIV, behavioral sciences, epidemiologists, government representatives, clinical care providers, community health centers, substance abuse and/or mental health providers, Ryan White-funded organizations, and housing agencies. The participants represented different genders, ages, and races/ethnicities.

The goal of the two-day meeting was to facilitate technical assistance for community stakeholders, HPG members, and the Puerto Rico Department of Health staff that will increase understanding of and collaboration in the HIV prevention planning process, as well as to develop next steps for the HPG to address their membership criteria, consensus around HPG bylaws, and broad stakeholder engagement planning.

The objectives of the meeting were to: • Increase understanding of the CDC Funding Opportunity Announcement PS121201, its requirements and deliverables • Improve understanding of and readiness to implement the 2012 CDC HIV Planning Guidance • Understand the importance of and models for broad stakeholder engagement in the HIV prevention planning process • Advance meaningful collaboration between the health department, HPG, and community stakeholders in the HIV planning process Marissa Tonelli, Dr. Jesus Felizzola, and Dr. Rebecca Vargas-Jackson (HealthHIV facilitators), and Bessie Lopez, HPG government co-chair with the Puerto Rico Department of Health, welcomed the meeting participants. Each participant received a folder from HealthHIV with the day's agenda, a demographic information sheet and pretest, and guiding principles for respectful group discussion. Facilitators led participants through introductions where they defined their role in HIV prevention, care, or treatment in Puerto Rico, and shared one word that described why they were in the room that day.

HealthHIV developed a word cloud (on the next page) based on the “one word” 3

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Participant Responses to “Why Are You Here Today?” in San Juan, Puerto Rico. May 22, 2013.

Words in Graphic (Translation): Trabajo Presencia Integración Perseverancia Clarificar UDI Compartir Compromiso Aprender Liderar Colaboracion

Work Presence Integration Perseverance Clarify Injection Drug User Share Commitment Learn Lead Collaboration

Following introductions, facilitators presented the roles and responsibilities of HealthHIV, HPG members, and health department representatives in the technical assistance delivery process, and the goal and objectives of the TA meeting. To provide additional background and context for the TA meeting, Dr. Vargas-Jackson presented detailed information about new national strategies, such as the National HIV/AIDS Strategy (NHAS)iii and High-Impact HIV Prevention (HIP)iv, biomedical advances and the HIV treatment cascade, and PS12-1201.

Facilitators separated participants into four small groups to discuss the challenges and successes that community members see in the current HIV prevention planning process. Participants outlined and ranked the challenges and successes in their small groups and reported the information collected back to the larger group. This information is aggregated in the next section of this report.

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Group Activity #1 What are the challenges to combat the HIV epidemic in Puerto Rico? How do you rank those challenges?

Among the four small groups, the highest-ranking responses were: • Lack of public policy that supports HIV prevention • Reduction in funding opportunities • Lack of inclusion of other sectors in the HIV planning process • Structural problems in handling of funds • The failure or delay of providing HIV education to youth (education vs. what happens on the street) o ! Leads to HIV discrimination and stigma • Recruitment mechanism for new partners and collaborators • ADAP group function • HPG visibility (and acceptance of visibility) and relevance o How do we market and outreach better?

• Changing role of the group (HPG) as a result of changes to the planning process • Different interpretations of new HIV Planning Guidance among HPG members and the health department Other responses regarding challenges that exist were: • Institutional stigma • Lack of transportation support services • People with HIV have no collective voice in Puerto Rico • Resistance to new HIV Planning Guidance from some HPG and community members • Lack of fundamental resources What are the successes in combating the HIV epidemic in Puerto Rico? How do you rank those successes?

Among the four small groups, the highest-ranking responses were: • Community support for the development of HIV-related legislation, such as mandatory testing within the criminal justice system and disclosure/confidentiality policyv • Participation and retention of HPG members • Experience and professionalism of HPG members • Integration of new members from different disciplines to the group and consensus of group around broader sector participation o Prevention, treatment, academia • Diversity of sectors in HIV planning

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Collaboration between team members in the development of a jurisdictional plan Involvement in "facing AIDS" Commitment of the state to a public health strategy for condom distribution Study of service gaps/needs

Other responses regarding successes were: • Letter of concurrence to CDC • Achievement of broader prevention plans • Rapid HIV tests in clinics • Remembrance process • Inclusion of broad sectors in the engagement process

Participants work in small groups to list and rank challenges in the Puerto Rico HIV planning process.

San Juan, Puerto Rico. May 22, 2013.

Following a lunch break, Dr. Vargas-Jackson provided an introduction of the CDC HIV Planning Guidance to participants. The presentation addressed the following topics: • Fundamentals of HIV prevention planning (parity, inclusion, and representation) • Recent changes to the HIV Planning Guidance • Broad stakeholder engagement in the HIV planning process • Monitoring & evaluation requirements • HPG letters of concurrence, concurrence with reservations, and non-concurrence • Roles and responsibilities of the HPG and health department

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Facilitators engaged participants in full group discussion related to stakeholder engagement and HPG responsibilities. The questions posed and participant responses follow in the next section of this report.

Group Activity #2 What is HPG’s definition of "stakeholders" (both those who may be part of the HPG membership and those who are broader stakeholders)?

Any person or group representative that is infected or affected by HIV, works with populations vulnerable to HIV infection or the population living with HIV, and is interested and has a stake in improving health outcomes for people living with HIV. The stakeholder should come mainly from the regions of highest incidence and prevalence of HIV in the island and can provide input into the HIV planning process.

What are the roles and responsibilities of the HPG? • Develop and/or review processes and operational methods of the HPG • Collaborate with the health department in the development and implementation of the jurisdictional plan (specifically in regional/local implementation) • Ensure that the goals and SMART objectives within the jurisdictional plan are being met • Participate in the HIV prevention planning process • Provide feedback to the health department from the perspective of community members/consumers • Prioritize populations and interventions • Disseminate the jurisdictional plan to community members • Educate peers around HIV prevention activities and HIV planning What are the responsibilities of the HPG in broad stakeholder engagement?

• Develop, with the health department, a process and strategies for community stakeholder engagement • Understand the engagement process and be able to explain it to others • Identify who is currently here (at the planning table) and who is missing • Set participation limits/eligibility criteria • Identify and refer potential participants • Retain and sustain commitment of the broad stakeholder • Identify and provide the necessary settings with the health department for meetings and engagement • Share our experiences as HPG members Are all stakeholders represented at this meeting? Who is missing?

• Federal Housing • Transportation

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SAMHSA Educational institutions or agencies Family Police Clinics and clinicians Other government sectors (with different services/funding streams) • Elderly, Domestic Violence, Women, Veterans Government Insurance Plans

At the conclusion of this conversation, participants came to a consensus that it is important to have a specific mechanism within the HPG to facilitate communication and engagement of community stakeholders. Note: This list is not comprehensive. The list is based on a 10-minute initial brainstorm on the afternoon of May 22, 2013. For additional stakeholders identified by the HPG, see Group Activity #3 on page 8.

After the first day (May 22nd) of the technical assistance meeting, participants reviewed the agenda for Day Two and asked facilitators remaining questions. Facilitators asked participants to review the slides/handouts from Day One and think about strategies for broad stakeholder engagement that they would share in the next day’s discussion (on May 23rd).

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Day Two— Wednesday, May 23rd On Wednesday, May 23rd, the HealthHIV team facilitated the second day of the HIV Prevention Planning Group (HPG) technical assistance meeting in San Juan, Puerto Rico. Facilitators engaged participants in a review of the previous day’s activities and welcomed introductions from new attendees. The second meeting day emphasized a dynamic interaction between participants and small group activity. The facilitator reiterated that the most recent jurisdictional plan is a living, constantly evolving process that is regularly informed by the HIV planning process. Bessie Lopez HPG governmental co-chair introduced Marizta Cruz from the HIV/AIDS Surveillance Office at the Puerto Rico Department of Health, who presented information on HIV epidemiology in Puerto Ricovi.

Following the HIV epidemiology data presentation, Dr. Jesus Felizzola provided an overview of CDC’s broad stakeholder engagement process and requirements. Dr. Felizzola asked participants, as a full group, to respond to a variety of questions related to the stakeholder engagement process. The questions posed and participant responses follow in the next section of this report.

Group Activity #3 How do we determine what is a stakeholder or partner in the planning process (both those who may be part of the HPG membership and those who are broader stakeholders)?

• People infected or affected • Individuals or groups that represent an organization that serves people living with HIV (PLWH) • Organizations that provide direct or support services to PLWH • Researchers and academics • Community leaders • Groups that work with vulnerable populations • Community-based organizations • Individuals committed to advancing process and improving health outcomes • Epidemiologists • Clinicians involved in HIV management Who do the participants consider “stakeholders” in the HIV planning process?

• People living with HIV • Persons at risk for HIV/high-risk negative community o Drug users • Community-based organizations that serve the community infected or affected by HIV • Legal sector

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o Law school/public legal service providers o Legislative health committees Clinical Providers/Associations o Public Health Center (other centers such as Ponce, etc.) o College of Physicians/HIV Treatment Association o AMSCA o AETCs o Hospital Associations o Hospitals and clinics Researchers/Epidemiologists o Academia (Universities) o Professionals/students of human behavior (psychology) Private sector o Advertising agencies o Media o Pharmaceutical industry o Foundations Other government agencies o Department of Education o Department of Family Affairs o ASSMCA (Department of Mental Health and Addiction) o ASES (Social Security Administration) Other HIV planning groups o Ryan White Planning Council/regional planning bodies

What can the HPG do to recruit new members, retain members, and improve meeting attendance?

• Provide feedback to the updated bylaws and finalize HPG bylaws • Implement an HPG structure/composition with defined functions, where all stakeholders know what their specific roles are in the process (vote/voice) • Expand sector representation/integration within the group to ensure members feel as if the HPG truly represents the community • Equal participation among all HPG members • External promotion of HPG • Better understand/plan for what resources (funds, time, broader stakeholders/ subject matter experts) will be needed and when • Provide more education to existing and new HPG members (ongoing education/professional development) • Develop and implement a method for facilitating member participation in technical assistance activities and ensuring that the information provided to participants is applied in the ongoing HIV planning process

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What are the HPG’s responsibilities in relation to new members?

• Identify current barriers to HPG member participation and strategize around options for removing these barriers • Identify and refer potential candidates to HPG (with full membership) • Implement a mentorship process by sharing knowledge and experience with new members (with full membership) • Ensure the necessary environment (convenient meeting location, advance notice, and refreshments) to retain and sustain member commitment As a result of this discussion and exercise, participants agreed that a next step for the HPG is to further define "stakeholders" and "commitment" and to ensure that all HPG members, and the health department are in consensus around what it means when someone says “stakeholder” or “commitment”. This will be addressed in the updated HPG bylaws.

Following the full group discussion and exercise, participants were divided into two groups to discuss the next steps to be accomplished by the HPG in order to implement a functional HIV planning process that will truly inform HIV planning efforts in Puerto Rico. HealthHIV has summarized the responses in the next section.

Participants work in small groups to discuss next steps that the HPG must take in the HIV planning process. San Juan, Puerto Rico. May 23, 2013.

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Group Activity #4: Next Steps Next Steps for the HIV Planning Group 1. Read and understand the Guidance a. Know the process, in order to explain it to others b. Implement a process that responds to the requirements of the Guidance 2. Identify inactive group collaborators a. Identify who is here and who is not (inventory), identify criteria (region, service area) b. Invite key people as partners or members 3. Review the list of collaborators 4. Revise the definition of “stakeholders” 5. Establish criteria for eligibility, inclusion, and participation (determine voice/vote) –include limits for participants 6. Make an inventory of resources a. Update epidemiology data 7. Identify people to complete tasks (ad hoc) 8. Establish recruitment strategies a. Formal presentations to stakeholders (from media, etc.) b. Ongoing education process (mentors) 9. Document and identify all processes aimed at recruiting 10. Set retention and participation strategies a. Encourage participation 11. Review and update the regulations a. Defining events in which votes can be extended 12. Focus training on the level of involvement 13. Document, monitor, and evaluate the process 14. Monitoring HIV services (challenges and opportunities) At the end of the two days of technical assistance, HealthHIV asked participants to complete a meeting process evaluation. All evaluations and demographic forms were confidential and collected by the meeting facilitators for reporting purposes only. Some individuals publicly shared what he/she achieved during the two-day meeting with the full group of participants. The responses are listed below.

What did we achieve in these past two days?

• A better understanding of the first two steps of the HIV Planning Guidance and the community engagement process • Health department and community stakeholders worked collaboratively to align with the new Guidance • Learned that we may need to revisit the engagement process we designed in light of what we learned during the meeting • New perspective to revisit the documents, plans, and better define the selection criteria for HPG membership

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Consensus that we must continue to work on further defining stakeholders, commitment, belonging, involvement, and relevance

Overall, the two-day technical assistance meeting in Puerto Rico was a success. The evaluations showed that participants improved knowledge of the planning process and understanding of the CDC recommendations. Positive responses were also received via the qualitative evaluation. Participants encouraged ongoing involvement from the CBA provider (HealthHIV) for future technical assistance and facilitation to fully realize their goals of an effective and functional HIV Planning Group.

Participants pose for a photo during the May 22-23, 2013, technical assistance meeting.

San Juan, Puerto Rico

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LIMITATIONS 1. Meeting Invitation: Official notification to the participants by the health department was not completed until 10 days prior to the May 22-23rd meeting.

HealthHIV was informed that an informal notification had been distributed prior to the official notice; however, most stakeholders reported that they did not receive this notification. There was a delay in receiving feedback on materials. HealthHIV had to wait for feedback from the health department and the HPG co-chairs regarding the language for the invitation, which contributed to the delay in notifying HPG members. As a result, some HPG members were challenged to attend the meeting on such short notice, especially those needing to secure travel arrangements from outside of San Juan.

2. Meeting Length: The health department informed HealthHIV that most of the HPG meetings occur in the evenings or during one-day sessions. The length of the meeting may have been a barrier to attendance because HPG members had to be absent from day-to-day commitments for two full days.

3. Low Attendance: Although the attendees were very thoughtful and engaged in the process, the group was not fully representative of the epidemic across regions, risk populations, and agency focus. This was a barrier to effectively providing TA to the Puerto Rico HPG, since many members were not in attendance to receive the information and participate in the collaborative process.

HealthHIV worked post meeting with PR DOH to identify stakeholders who were not in attendance to ensure that subsequent meetings have broader representation. HealthHIV also provided PR DOH will all PowerPoint presentations and extra print materials to distribute to HPG members that were not in attendance.

4. Tension between HPG and health department: Due to confusion and discomfort around shifting roles and responsibilities of the HPG and the health department as a result of the new HIV Planning Guidance, there was significant tension between the health department and community stakeholders/HPG members.

HealthHIV worked towards overcoming this barrier as a third-party facilitator through educating participants around roles and responsibilities (as outlined in the CDC Guidance), collaborative activities, and engagement of the HPG government co-chair.

5. Dis-engagement of HPG members: Through conversations with attendees and HPG co-chairs, HealthHIV identified that as a result of recent tensions between HPG and the health department, some members do not feel like they have a role in the planning process and that meetings are not a good use of their time. This may have impacted meeting attendance.

6. Lack of Spanish-language materials: There is a lack of materials, such as the HIV Planning Guidance, available in Spanish. This forces PR HPG members, many of whom Spanish is their first language, to either read documents in English or rely on rough translations provided by third parties.

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NEXT STEPS Following the CBA activity on May 22-23, 2013, HealthHIV held an in-person meeting that included Puerto Rico Health Department representatives Dr. García, Bessie Lopez, and Johany Ramos, HealthHIV, and the CDC Project Officer (by phone). The group acknowledged ongoing CBA needs around HPG criteria and bylaw development and discussed next steps to be completed following the two-day CBA meeting. The health department wants HealthHIV to return to Puerto Rico for a second meeting as a thirdparty facilitator to discuss HPG criteria for membership and bylaws. HealthHIV will develop a final meeting and evaluation report to distribute to CDC and the health department.

On June 19, 2013 HealthHIV had a brief in-person meeting at CDC with the Project Officer (PO) and discussed moving forward with a follow-up meeting in Puerto Rico. The PO agreed that HealthHIV should facilitate a discussion of HPG criteria for membership and bylaws.

On June 21, 2013, HealthHIV coordinated a conference call with the health department representatives and the CDC Project Officer to discuss and finalize next steps. All parties agreed that HealthHIV would facilitate the meeting on August 28-29, 2013. It will be a second, one and one-half day workshop to review the jurisdictional plan, what has been done so far, and develop working groups to continue the discussion of HPG membership criteria and HPG bylaws. The first half-day will be open to the public (nonHPG members) to collect feedback from other stakeholders around membership criteria. HealthHIV confirmed the dates and the health department sent out a “Save the Date” to HPG members in early July. The formal invitation was distributed on August 2, 2013 to HPG members and broader stakeholders.

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APPENDIX A: Invitation to Attendees (Spanish)

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APPENDIX B May 22 & 23rd Meeting Agenda

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APPENDIX C May 22 & 23rd Technical Assistance Meeting Attendees First Name Maria Martiza Ivelisse Blanca Miguel Carmen Angel Bessie José

Last Name Collazo Cruz Cruz Cuevas Delgado Diaz Jimenez Lopez Mulinelli

Yomary Hector

Reyes Rodriguez Rodriguez Velazquez Santos Segundo Torruella

Raymond Mirta Luis Rafael

Agency COSSMA, Inc. Department of Health Puerto Rico Programa SIDA de San Juan (PSSJ) Profamilia Community Member Department of Health Puerto Rico Hogar CREA, Inc. Department of Health Puerto Rico Coaí, Inc. Department of Health Puerto Rico Ryan White Part B La Perla de Gran Precio (LPGP) Community Member Aspira Inc. Puerto Rico HIV Prevention Planning Group Casa de Ayuda Intermedia al Menesteroso

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APPENDIX D Contact Information Marissa Tonelli Prevention and Policy Manager HealthHIV 202-507-4726 marissa@healthhiv.org Michael D. Shankle, MPH Director of Prevention and Policy HealthHIV 202-507-4730 michael@healthhiv.org

HealthHIV 2000 S ST NW Washington, DC 20009 (202) 232-6749 www.HealthHIV.org http://www.facebook.com/HealthHIV @HealthHIV

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APPENDIX E Referenced Resources i

Centers for Disease Control and Prevention PS12-1201 “Comprehensive HIV Prevention Programs for Health Departments” (PS12-1201) http://www.cdc.gov/hiv/policies/funding/announcements/ps12-1201/index.html ii

HIV Planning Guidance http://www.cdc.gov/hiv/topics/funding/ps12-1201/planningguidance.htm iii

National HIV/AIDS Strategy (NHAS) http://www.whitehouse.gov/administration/eop/onap/nhas iv

CDC High Impact Prevention (HIP) http://www.cdc.gov/hiv/strategy/hihp/ v

State HIV Testing Laws: Puerto Rico. National HIV/AIDS Clinicians' Consultation Center, April 2011. http://www.nccc.ucsf.edu/consultation_library/state_hiv_testing_laws vi

CDC Data for States and Metropolitan Statistical Areas, 2011—United States and 6 dependent areas http://www.cdc.gov/hiv/library/reports/surveillance/2011/surveillance_Report_vol_23.htm l

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