Panel Agenda 90 minutes

Transcription

1 Ongoing Community Engagement Successes and Lessons Learned from the KP Research Bank s Regional and National Community Advisory Boards and PORTAL s Patient Engagement Council Sarah Madrid (KP Research Bank Community Advisory Board) Cabell Jonas (KP Research Bank Community Advisory Board) Melissa Preciado (KP Research Bank Community Advisory Board) Carmit McMullen (PORTAL Patient Engagement Council) Tia Kauffman (Discussant; CSER2)

2 Panel Agenda 90 minutes I. Introduction of panelists and discussants 5 min II. Overview - 15 min KP Research Bank / 15 min PORTAL Program descriptions Building the group Activities and patient input III. Challenges & Lessons Learned 15 min IV. Discussant and Community Feedback 10 min V. Q&A and Attendee Engagement 30 min 2

3 Panelist Introductions 5 min. Kaiser Permanente Research Bank - Sarah Madrid (KP Colorado) - Melissa Preciado (KP Southern California) - Cabell Jonas (KP Mid-Atlantic States) Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) - Carmit McMullen (KP Northwest) Discussants - Tia Kaufman (KP Northwest) - Carolyn Taylor (unable to attend) 3

4 What are our goals for community engagement? Ethical: Develop trustful relationships between the research program and communities Address community concerns about privacy, security, access and use Exhibit respect for members needs, preferences, and cultural priorities Build community knowledge of health research and biobanking Give back to participants Practical: Increase recruitment, particularly of hard to reach populations Ensure that Informed Consent is truly informed Build legitimacy, credibility of research Inform policy development Community engagement is fundamentally about building relationships. How this relationship is built will determine the successful implementation and sustainability of genomic research projects and biobanking that incorporate community engagement strategies. P. Tindana, et al. and the H3Africa Community Engagement Working Group. Global Health, Epidemiology and Genomics (2017), 2, e13, page 1 of 5. doi: /gheg

5 Program Description: KP Research Bank Community Advisory Boards (CABs) KP Southern California Regional CAB National Community Advisory Board (NCAB) = 2 community representatives from each of the 8 Kaiser Permanente regions Regional Community Advisory Boards (RCABs) = representatives in each group, KP Southern California and KP Mid-Atlantic States (KP Northern California has a legacy CAB on hold) Members of the CABs represent key constituencies within the region and nationwide 5

6 Building the Groups: KP Research Bank Community Advisory Boards (CABs) National CAB Est Regional CABs Est Identifying and selecting patient partners Building and engaging the groups KP Mid-Atlantic States Regional CAB IN-PERSON MEETINGS VIRTUAL MEETINGS National CAB Leadership Team All CAB webinar + NCAB (national telepresence) Regional CABs Coffee chats Regional webinars ELECTRONIC Redbooth , Text SCAL / KPMAS: - MailChimp - Survey Monkey 6

7 Activities and Input: KP Research Bank Community Advisory Boards (CABs) NCABs provide input on: Input Provided by the CABs KPRB strategic planning National recruitment strategy Access to, use of the collection Including underrepresented groups in research Education, informed consent Current issues in bio-banking On the horizon: Dissemination of research conducted using the collection RCABs provide input on: Raising awareness of the KPRB at a regional level Building local trust in research Raising awareness about community issues (e.g., Henrietta Lacks movie) and offering input on program response Conduit for raising local concerns to the program leadership and NCAB team Informed Consent Revisions Testimonial Videos Why I Joined Community Reviewers on Access Committee Community Partners

8 Program Description: PORTAL Patient Engagement Councils (PECs) 8

9 Building the Groups: PORTAL Patient Engagement Councils (PECs) Colorectal Cancer Congenital Heart Defects Overweight or Obese Identifying and selecting patient partners Building and engaging the groups 9

10 Activities and Input: PORTAL Patient Engagement Councils (PECs) Cadence and format of meetings and engagement activities Input provided by the patient partners 10

11 Challenges and Lessons Learned 15 min PORTAL and KP Research Bank

12 The Voices of Our Community Partners Discussant Input 10 min Part of the joy of being involved is the tremendous progress that has come to this whole area which was always evident when we attended the HCSRN Conference and the farranging scope of work that has grown into many dimensions of life and governmental action. Surely it is some proof that much has been accomplished in patient-centered research and much more will hopefully impact health care in the future. PORTAL PEC Member One of the things that was very fascinating to me is that there is a company Kaiser that is willing to meet with people There are no secrets, they are not trying to hide something. That meant a lot to me. As a member of the faith community, and Hispanic community, we can bring the concerns and questions our communities might have. -KPRB Regional CAB Member 12

13 Audience Q & A and Attendee Engagement 30 min

14 THANK YOU! Sarah Madrid (KP Research Bank Community Advisory Board) Cabell Jonas (KP Research Bank Community Advisory Board) Melissa Preciado (KP Research Bank Community Advisory Board) Carmit McMullen (PORTAL Patient Engagement Council) Tia Kauffman (Discussant; CSER2)