Patient-Powered Research Network Workshop
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The PCORnet PPRN partner meeting aimed to foster collaboration and share best practices among patient-centered research networks to enhance patient engagement and minimize resource waste. Key objectives included identifying common needs, shared goals, and initiating collaborative activities to improve research outcomes. Discussions emphasized the importance of patient governance, data sharing policies, and strategies for maximizing participant engagement and retention.
Patient-Powered Research Network Workshop
- 2. Welcome! Rachael Fleurence, Director CER Methods and Infrastructure Program
- 3. PPRN Practices, Challenges, and Opportunities Sarah Daugherty, PhD MPH PCORI PPRN Workshop January 2014 3
- 4. Workshop Goal “Create a culture between PPRNs that fosters sharing of best practices to avoid waste of resources and unnecessary duplication.” 4
- 5. Workshop Objectives Objective 1 • Identify common questions and needs. Objective 2 • Identify shared goals and objectives. Objective 3 • Engage in peer-learning and share knowledge, resources and tools. Objective 4 • Initiate collaborative activities that enhance the achievement of shared and individual goals.
- 6. PPRN Survey Informed Our Agenda Survey questions Infrastructure design Patient engagement Greatest challenges Cross-collaborations Innovative designs or plans
- 8. Governance “The growth will also necessitate new systems for decision-making and prioritization within our Centers.” TransparentCoordinated Effective Structure Process DecisionsDissemination Implementation
- 9. Outreach and Sustaining Engagement “How do you bring people up the engagement ladder so that they can get to own the whole process?” “Do we focus on deep engagement from a smaller number of patients, or just SOME engagement from a large number of patients?”
- 10. Outreach and Sustaining Engagement • Approaches used to identify hard to reach populations • Methods to collect feedback • Competencies and skills needed for effective partnership • Communication vehicles • Impact of PCORnet • Optimizing plans for participants to report new data over time. • Maximizing engaged retention Sustaining Engagement Awareness OutreachAssessment
- 11. Greatest Challenges “Translating awareness to enthusiasm to action” Misperceptions about privacy, security, and risks of sharing data Attrition of original participants Sustaining PPRN after month 19 and beyond
- 12. Cross-Collaborations Common data model Co-enrollment Participant-friendly generic consent Ongoing dialogue between PPRNs and CDRNs Methods for collecting PRO in non-clinical setting Basic information about purpose of PPRNs written in generic way for all patients
- 13. Guiding Questions for Discussion Common areas to address collectively? What resources and tools exist already? What resources and tools could be developed? Processes to leverage collective skills and knowledge? What are the action items needed to move forward? How can PCORI facilitate continued sharing?
- 14. PPRN Workshop Outcomes Establish working groups Connect working groups to Task Force Identify processes to facilitate sharing
- 15. Governance Alison Rein, Seth Ginsberg, Michael Kappelman, Barbara Kroner
- 16. Disease homogeneity PPRN PCORnet participants Age Gender Utilization of care Health insurance Race/ethnicity Education/SES Information seekers PPRN members US Patient Population How Will PCORnet Patients Differ From Total US Patient Pop’n? • What role does privacy concerns play in who will participate? • Why are the populations different? • How will study results be affected? Factors that affect health outcomes AND participation in advocacy groups or research studies: Disease severity
- 18. 3 Levels of Patient Governance Scientific leadership Patient leadership Community responsiveness
- 19. Scientific Leadership Dr. Balfour Sartor (Network PI) Adult gastroenterologist and microbiome expert Chief Medical Advisor to the CCFA Diagnosed with Crohn’s disease at age 21 (~40 years ago) Sean Ahrens Founder of Crohnology Computer programmer Diagnosed with Crohn’s disease during childhood Both will serve on the network executive committee Dual perspectives critical to informing policies related to data sharing and return of research findings • Should patients be informed of genetic results? • Might there be unintended consequences?
- 20. Patient Governance Committee (PGC) Key responsibilities: 1) Define network’s mission, 2) Assist in prioritizing patient-driven research agenda 3) Assist in the review of proposed network studies/partners 4) Develop policies regarding use and sharing of data 5) Assist in developing plans to facilitate communications among network participants 6) Receive and act upon input from broader network community PGC will report directly to the Executive committee 2 members of the PGC will hold seats on the Executive Committee (total of 4 patients) PGC must independently approve all substantial changes in the direction of the network
- 21. PGC Member Selection and Training 5 lay patients 2 with prior experience serving on CCFA grant review committees Former Chair of the CCFA National Council of College Leaders program 2 selected by popular election by Crohnology community • Information about the PPRN posted on Crohnology • Self-nominations were invited. • Candidates posted description of interests and qualifications • On-line election All will complete CCFA stakeholder training course
- 25. Crowdsourcing to broaden responsiveness Draft policies to be posted online All network members will be able to comment, suggest changes, or contribute more substantially through the use of “wiki-style” editing. The PGC will incorporate member feedback into the final version of all policies.
- 26. Communication and dissemination of research findings Network updates will be posted on discussion pages (also distributed by emails) Member comments and “hearts” will be periodically reviewed by the PGC and the network’s scientific leadership Research findings will be communicated using lay summaries and infographics
- 27. Infographics
- 28. In 4 weeks: 528 shares/views 116 likes 67 comments 92% indicated that the infographic “effectively summarized the research findings”
- 29. Identifying and Prioritizing Research Crowd sourcing Approach Crohnology already uses to prioritize new feature development Pre-work Candidate research topics collected from PGC, review of >2,000 questions posted on Crohnology, input from PPRN scientific team, and review of CCFA research priorities Online voting through “User Voices” functionality of Crohnology
- 33. Outreach and Sustaining Engagement Sean Tunis, Andrew Nierenberg, Susan Redline, Kathleen Sullivan
- 34. Research Issues: Conducting Observational & Experimental Research Rich Platt
- 35. Research Issues: Navigating Informed Consent and IRBs Rob Califf, Mark Pletcher, John Walsh
- 36. Pipeline to Proposal Awards & PCORI Ambassador Program Sue Sheridan
- 37. Tier 1 Up to $15,000 Up to 9 month term Tier 2 Up to $25,000 Up to 12 month term Tier 3 Up to $50,000 Up to 12 month term PCORI Funding Announcement Researchers who unsuccessfully submitted a PFA and need to improve proposal Pipeline to Proposal Awards 37 Or submissions to other PCOR/CER Funders
- 38. Tier I Pipeline Awards (Up to $15,000 for up to 9 months) Available to individuals, consumer/patient organizations, clinician(s), researcher(s) or a combination of the above to support: Community building around an area of research interest to improve outcomes for patients Creation of structure and communication strategies Develop an understanding of PCORI, and “research done differently” 38
- 39. Tier II Pipeline Awards (Up to $25,000 for up to one year) Available to emerging research/non-research partnerships to support: Data network and registry development Development of infrastructure Generation and refinement of research questions through community events, town hall meetings, etc. 39
- 40. Tier III Pipeline Awards (Up to $50,000 for up to one year) Available to advanced research/non-research partnerships, including those who submitted PCORI proposals and were not funded, to support: PCORI research proposal (re)submission focusing on development of engagement plan Research partnership skill development 40
- 41. Intermediate Funders and Pipeline Regions 41
- 42. Western Region Pilot Thirty Awardees Announced December 2013 Creating Healthy Communities: Engaging Native American and Spanish-Speaking Families and Sharing Family Wisdom to Reduce Childhood Obesity Improving the Lives of Alzheimer's Patients and their Caregivers: A Patient Centered Statewide Approach Mobilizing Community Engagement for Health in a Southern New Mexico Border Region Colonia New Mexico LGBT Health Improvement Network Usefulness of Pre-diabetes Management in Breast Cancer Care The Hispanic Family Asthma Outcomes Research Network Building Capacity for Novel Screening Delivery for Chronic Conditions to Benefit Miners in New Mexico Culturally Appropriate Options for Diabetes Prevention and Care for Low-Income Latinos Citizen scientist Developing Infrastructure for Patient Centered Melanoma Research 42
- 43. Western Region Pilot Thirty Awardees Announced December 2013 Establishing a Patient-Centered Research Community for Cystic Fibrosis Sepsis Survivors Engagement Project (SSEP) Preventing Missed Appointments for HIV Patients Empowering Patients and Their Families to Improve Outcomes That Are Most Important to Them after Lung Cancer Surgery YOU COMPLETE ME! Demonstrating the Efficacy of An Innovative Medical Appointment Model to Support Aging Patients Healthy Outcomes for Older Foster Youth Addressing Obesity in Latino Adolescents with Spina Bifida Creating the Patient Centered Primary Care Council in the Highland Hospital Adult Medicine Clinic: Strengthening Primary Care Together Health Literacy and the Patient Perspective in Primary Care Engaging Communities in the Fight Against Preterm Birth 43
- 44. Western Region Pilot, by State 44 • Idaho award includes New Mexico, Oregon, and Wyoming • Two of the Oregon awards are multi-state; • Oregon and Utah • Oregon and Washington • No awards in AK, HI, or NV
- 45. Next Steps 45 • Evaluate West region Tier I pilot, revise processes as necessary • Identify South, Midwest, Northeast, and national Intermediate Funders (IFs) • Open first round of Tier I Pipeline Awards for South, Midwest, Northeast and national IFs • Open first round of Tier II Pipeline Awards for all five regions • Open first round of Tier III Pipeline Awards for all five regions
- 46. Western Region Pilot Thirty Awardees Announced December 2013 Connecting Research and Real Life: Building a Network in the Columbia River Gorge Taking Care of Our Parents: Improving the Coordination of Care for Elderly Community Members Development of Community Partnership for Patient Centered Outcomes Research in Type 2 Diabetes Patient-Centered Transitions for Episodes of Surgical Care Increasing Patient Engagement and Capacity Building between Community Stakeholders and Patients in order to Improve Diabetes Education and Management among School-Aged Children Puget Sound Asthma Coalition: A Community, Clinical, and Academic Partnership The 'CISE' Project for Family Caregivers Making Stomach Cancer a Health Priority among Asian Americans Building a Community of Safe Sleep for Infants Patient-Centered Outcomes for the Parkinson's Disease Community in Wyoming 46
- 47. PCORI Ambassador Program Update
- 48. Program Overview The volunteer initiative that trains, equips, and mobilizes patients, caregivers, organizations and other stakeholders to share PCORI’s vision, mission and PCOR principles with their respective communities, participate as full partners in research and to help assure the sharing and uptake of information generated from PCORI funded projects. Train….Ambassador Training: Five modules of training focused on PCORI, their role, PCORI funding, and working in research teams Equip….Ambassador Toolkit: Provides support material such as talking points, presentation template, social media guide Mobilize…Ambassador Yammer Community: Online community that encourages the exchange of best practices in different communities 48
- 49. Benefits of Being an Ambassador Benefits of Program: Receiving PCORI Ambassador communications tools and PCOR training; Being recognized as a “PCOR Trained Ambassador” on the PCORI Ambassador webpage; Co-authoring publications, submitting guest blogs, or participating in other media opportunities; Being highlighted for work in patient-centered research in PCORI e-newsletters; Learning of opportunities to serve as PCORI reviewers or participate in working groups and on survey panels; and Collaborating and serving as a panelist with PCORI or others on events such as webinars, conferences, and panels. 49
- 50. Ambassador Interest by Region and Ethnicity (total 101) 6% 7% 14% 4%62% 4% 3% Asian (Not Hispanic or Latino) Black or African American (Not Hispanic or Latino) Hispanic or Latino American Indian or Alaska Native (Not Hispanic or Latino) White (Not Hispanic or Latino) Other Prefer not to answer 50 14% 13% 18% 29% 23%
- 51. Which of the following is your primary community? (total 101) 51 2% 7% 12% 3% 28% 22% 21% 6% 0% 5% 10% 15% 20% 25% 30%
- 52. Individual or Organization Ambassador (total 101) 18% 83% Organizational Individual 52
- 53. Facilitating Interaction & Communication Between PPRNs and CDRNs Sarah Greene, MPH, Senior Program Officer, CER Methods & Infrastructure PPRN Partner Meeting
- 54. Session Objective 54 Focus Questions: 1) How can PCORI help facilitate collaborations between your PPRN and the 11 CDRNs? 2) Collaboration could be driven by research focus, geography, or both. What are the pros and cons? 3) Given that the task forces will also act as incubators for collaboration, what else can PCORI do to stimulate partnerships across CDRNs and PPRNs that would add value? Open discussion about ways to optimize interaction
- 55. Questions & Opportunities -- PPRN Survey Design of the common data model Recruiting/enrolling in multiple studies simultaneously Creation of participant-friendly generic consent materials Communication plan to open an ongoing dialogue between the PPRNs and CDRNs Methods for collecting PRO in non-clinical setting Basic information about purpose of PPRNs written in generic way for all patients Tracking of communication vehicles and response rate Your survey responses included as reference
- 56. Break Out Sessions: 1) Stakeholder Engagement 2) Integrating PROs with Clinical Data 3) Standardized PCORnet Talking Points 4) Ad Hoc
- 57. Recap and Next Steps Sarita Wahba, Program Officer CER Methods and Infrastructure Program
- 58. Agenda Recap emerging ideas Identify which ideas are timely and actionable Channel your inner artist PCORI and Coordinating Center next steps 58
- 59. Emerging Ideas Categories Patient Engagement Communications / Branding CDRN / PPRN Collaborations Sustainability / Scalability Disruptiveness Engagement with non-patient Stakeholders Integrating PROs Creating Standardized PCORnet talking points …And More 59
- 60. Emerging Ideas Patient Engagement Develop a patient course Need sufficient patient representation on Steering Committee and Task Forces Define patient engagement and how it is different in CDRNs and PPPRNs Engaging disenfranchised patients Provide patients with a menu of options for levels of patient engagement Best practices for fast tracking feedback to patients Ensure meaningful patient engagement in data network development. Understand ways to engage with persons who are overweight or obese to support the establishment of the obesity cohort 60
- 61. Emerging Ideas Communication / Branding Develop a campaign that gets the word out to patients about why they can trust and should engage with PCORnet Use language that is understandable to the general public Use collaboration-based language Develop a plan to harness social media 61
- 62. Emerging Ideas CDRN/PPRN Collaboration Create/describe the value proposition for CDRNs to work with PPRNs allowing PPRNs to look for disease-specific patients within the CDRNS for enrollment connecting PPRNs with clinicians at CDRNS that treat PPRN-related conditions Others Involve PPRNs in the Health Systems Interaction task force Identify co-morbid conditions across networks Integrate into CDRN and PPRN platforms the ability to search for patients that are represented by a CDRN or PPRN Train clinicians in CDRNs to detect rare diseases 62
- 63. Emerging Ideas Sustainability / Scalability Create a best practices library so networks can learn from each other and additional groups can link to PCORnet in the future Develop a long term, concrete, and accessible vision of success so we can plan to achieve interim success Develop an 18-month vision for success 63
- 64. Emerging Ideas Disruptiveness Use novel creative strategies (music, art, visual tools, humor) to engage our partners and the general public 64
- 65. Emerging Ideas Engagement with Non-Patient Stakeholders Connecting claims data to EHR records Best practices for involving health systems and communicating the value proposition for health systems to engage with PCORnet Expand the value proposition to address needs of all stakeholders from vendors & funders to clinicians and patients Link AHIP into the Health Systems Interactions TF 65
- 66. Emerging Ideas Integrating PROs Develop group collaborations for creating standards for new PROs that are cross-cutting 66
- 67. Emerging Ideas Creating Standardized PCORnet talking points PCORnet elevator speech 67
- 68. Emerging Ideas …and more Create a forum to discuss research priorities Develop a plan to increase diversity and engage minority and underserved populations Create a diagram of data validation Incorporate rigorous methodology into data collection Create a unique PCORnet patient identifier Create a few menu options for engaging with IRB IRB SWAT / SWOT team Form mini-work groups to leverage best practices about platforms 68
- 69. Emerging Ideas …and more Develop a mentor system Share best practices in tiered/ modular informed consent Leverage existing tools and take cues from other industries (Apple, Amazon) to make research easier and more accessible 69
- 70. PCORI and CC Next Steps Clarify milestones and contract issues Clarify which work you can get started on that wont be derailed by TF decisions Send out information for logging onto the collaborative work space Invite networks to Task Force meetings Send updated contract language Post all of the CDRN and PPRN partner groups on the website Create and post a glossary of acronyms, research terminology, and other PCORnet specific terms (e.g., what we mean by a "node") 70
- 71. PCORI and CC Next Steps, cont’d Map intersections among the different partner networks Communicate our communications plan (how we will reach out to you) Respond about task force co-chair Create a page on the collaborative work space for existing resources and best practice guides (please send us your best practice resources) Create a yammer community Clarify the rationale for and the requirements for CDRN cohorts and survey of cohorts Clarify logistics around TF and SC meetings 71
- 72. PCORI and CC Next Steps, cont’d After task force kickoffs, TFs will begin to prioritize the work that needs to be accomplished over the next few months We will reach out to ask if you for permission to post your proposal or sections of your proposal 72
- 73. Debrief and Closing Remarks Rachael Fleurence