Patient Engagement
Advisory Panel
April 29, 2014
Alexandria, VA
Patient Engagement Advisory Panel, April 29, 2014 1
Recap of Day 1,
Overview of Day 2
Sue Sheridan, MIM, MBA
Director of Patient Engagement
Charlotte W. Collins, JD
Co-Chair
...
Agenda for April 29
3
9:00 – 9:30 a.m. Recap of Day 1, Overview of Day 2
9:30 – 10:30 a.m. Evaluation Subcommittee Report
...
PCORI Evaluation Framework:
Comments from PEAP
Evaluation Subcommittee
Evaluation Subcommittee
Mark Boutin, JD
Steven Blum...
Process for Generating Recommendations
Committee members reviewed draft PCORI
evaluation framework (February 14th version)...
Overarching Recommendations
(a.k.a. our “Top 10 List”)
1. The evaluation plan should link to the PCORI brand of
“research ...
Overarching Recommendations
6. More metrics need to be created to understand how
stakeholder engagement resulted in greate...
Program Timeline
8
Task Timeline
Welcome Inaugural Ambassadors – Patient
Engagement Advisory Panel
Saturday, September 21,...
PCOR Partner List and
PCORI’s Matchmaking App
Challenge
Celeste A. Brown, MPH
Program Associate, Stakeholder Engagement
9P...
The PCOR Partner List
10Patient Engagement Advisory Panel, April 29, 2014
The PCOR Partner List
A service on PCORI’s website, open to patients and stakeholders
who want to partner on a PFA researc...
PCORI’s Matchmaking App
Challenge
12Patient Engagement Advisory Panel, April 29, 2014
Motivation for the 2014 Matchmaking App Challenge
Researchers often ask how to find patients interested in
collaborating.
...
Goals of the 2014 PCORI Matchmaking App Challenge
Increase the ability for all user types – patient, stakeholder,
research...
PCORI Matchmaking App Challenge
Polished, ready-to-publish apps
Total Prizes: $150K
• 1st Place: $100K (60/40 payment sche...
Required Features
Facilitates creation of partnerships among all user types: researchers,
stakeholder, patient
Users must ...
Suggested Features
Social media integration for external networking
Robust user profiles
Advanced search options (e.g. geo...
Judging Criteria and Definitions
Creativity: uniqueness and innovation in approach to fulfilling the mandatory
requirement...
Timeline Overview
19
Challenge Development Period
 Challenge Launch Date March 17, 2014
 PCORI Webinar for Promotion Mar...
Questions?
matchmaking@pcori.org
www.pcori.org/pcorpartnerlist
www.pcori.org/challenge
20Patient Engagement Advisory Panel...
PCORI Principles of
Compensation Parity
Patient Engagement Advisory Panel, April 29, 2014 21
Compensation Parity Subcommit...
PCORI Patient Engagement Rubric
Time and contributions of patient partners are
valued and demonstrated in fair financial
c...
Issues That Matter
Who is compensated?
Who is providing the compensation?
For what level of activities?
How much?
Mandated...
Who Is Compensated
Patients
Caregivers
Patient Organizations
NOTE: Research subjects (study participants) are
not included...
Cover Reasonable Expenses
• Travel
• Accommodation
• Meals
• Childcare
• Internet/telephone
• Conference fees
• Training p...
Level of Activities
I. Simply informing
II. Consulting on decision
III. Deciding together
IV. Acting together
V. Encouragi...
Compensation Alignment with Activities
Parity reflects -
commitment
dedicated time
skills
expertise
 level of patient eng...
Other Considerations
Align with level of activities
Flexible – consider choice
Non-cash incentives
Opt-Out
Consult with th...
Program Timeline
29
Task Timeline
Welcome Inaugural Ambassadors – Patient
Engagement Advisory Panel
Saturday, September 21...
Discussion on “Patient” Definition,
Privacy Issues, and other Questions
Patient Engagement Advisory Panel, April 29, 2014 ...
PCORnet Update
Jaye Bea Smalley
National Urban Fellow and Special
Assistant to the Chief Engagement
and Dissemination Offi...
PCORnet Update
Revised Infrastructure Rubric
PCORI Patient Engagement Webinars
Strategic Portfolio Management
The ENACT To...
PCORI Network-Led Patient Engagement
Webinars
Building on recent feedback to create a continued dialogue and a
sharing of ...
34
PCORnet Patient Engagement Milestones
3.1 Description of patient roles and responsibilities in governance is developed and...
PCORnet Patient Engagement Milestones
4.11
Approaches for patients to securely extract their own data through EHRs and/or ...
Strategic Portfolio Management
Monthly calls with awardee teams
Quarterly progress reports
Completion of ENACT tool is req...
Engaging Patients in Infrastructure
38
Engage
EvaluateEnhance
PCORnet ENACT Tool Protocol
Integrate end-users into developing assessment
tool, interpreting findings, and disseminating ...
PCORnet Common Data Model Version 1.0
Demographics
 Date of birth
 Sex
 Race
 Hispanic
Enrollment data, including date...
Patient Engagement Advisory Panel, April 29, 2014 41
Thank you!
Safe travels home!
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Advisory Panel on Patient Engagement Spring 2014 Meeting: Day 2

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Advisory Panel on Patient Engagement Spring 2014 Meeting: Day 2

  1. 1. Patient Engagement Advisory Panel April 29, 2014 Alexandria, VA Patient Engagement Advisory Panel, April 29, 2014 1
  2. 2. Recap of Day 1, Overview of Day 2 Sue Sheridan, MIM, MBA Director of Patient Engagement Charlotte W. Collins, JD Co-Chair Darius Tandon, PhD Co-Chair Patient Engagement Advisory Panel, April 29, 2014 2
  3. 3. Agenda for April 29 3 9:00 – 9:30 a.m. Recap of Day 1, Overview of Day 2 9:30 – 10:30 a.m. Evaluation Subcommittee Report 10:30 -10:45 a.m. BREAK 10:45 – 11:15 a.m. Update on Matchmaking and Partner Lists 11:15 a.m. – 12:00 p.m. Compensation Subcommittee Report 12:00 – 12:15 p.m. BOXED LUNCH 12:15 – 12:45 p.m. Discussion on “Patient” Definition, Privacy Issues, and other Questions 12:45 – 1:30 p.m. Update on PCORnet 1:30 – 1:45 p.m. Wrap-up and Conclusion 1:45 p.m. Meeting Adjourned
  4. 4. PCORI Evaluation Framework: Comments from PEAP Evaluation Subcommittee Evaluation Subcommittee Mark Boutin, JD Steven Blum, MBA Sara van Geertruyden, JD Darius Tandon, PhD Patient Engagement Advisory Panel, April 29, 2014 4
  5. 5. Process for Generating Recommendations Committee members reviewed draft PCORI evaluation framework (February 14th version) Conference call to generate initial impressions from subcommittee members In-person meeting to generate specific recommendations for PCORI to consider Patient Engagement Advisory Panel, April 29, 2014 5
  6. 6. Overarching Recommendations (a.k.a. our “Top 10 List”) 1. The evaluation plan should link to the PCORI brand of “research done differently.” 2. The evaluation plan should provide information that is useful for multiple key audiences, including those making decisions about PCORI reauthorization.  Need to have a 3-year framework in place 3. Metrics should be created that are relevant for a 3- year evaluation framework. 4. The evaluation plan must be communicated in user- friendly language to the array of key PCORI stakeholders. 5. Stakeholder valuation of PCORI needs to be incorporated into the evaluation plan. Patient Engagement Advisory Panel, April 29, 2014 6
  7. 7. Overarching Recommendations 6. More metrics need to be created to understand how stakeholder engagement resulted in greater stakeholder capacity to engage in research. 7. Additional qualitative measures examining the impact of PCORI’s emphasis on patient and stakeholder engagement should be developed. 8. Completion of surveys that measure attitudes toward engagement should be a contract requirement. 9. More attention should be given to how PCORI’s work influences others (e.g., funders). 10. More attention should be given to how PCORI findings and products are used. Patient Engagement Advisory Panel, April 29, 2014 7
  8. 8. Program Timeline 8 Task Timeline Welcome Inaugural Ambassadors – Patient Engagement Advisory Panel Saturday, September 21, 2013 Invite workshop attendees, advisory panelist, merit reviewers, and PCORI funded project partners to join the PCORI Ambassador Program September 24- October 1, 2013 Development and release of PCOR Science Training November 2013 Conduct six-month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Training Summer 2014 Conduct one-year program evaluation Fall 2014 15-Minute Break Refreshments in the upper lobby foyer. Patient Engagement Advisory Panel, April 29, 2014
  9. 9. PCOR Partner List and PCORI’s Matchmaking App Challenge Celeste A. Brown, MPH Program Associate, Stakeholder Engagement 9Patient Engagement Advisory Panel, April 29, 2014
  10. 10. The PCOR Partner List 10Patient Engagement Advisory Panel, April 29, 2014
  11. 11. The PCOR Partner List A service on PCORI’s website, open to patients and stakeholders who want to partner on a PFA research team or on other PCORI initiatives PCORI’s initial approach to facilitate creation of partnerships, because engagement is something we demand from project teams Launch 1: March 4 – April 4  112 responses  Sent names to researchers from pragmatic trials, obesity, and transitions in care - targeted PFAs Launch 2: April 23 – May 15  For the PCORI Matchmaking App Challenge 11 www.pcori.org/pcorpartnerlist Patient Engagement Advisory Panel, April 29, 2014
  12. 12. PCORI’s Matchmaking App Challenge 12Patient Engagement Advisory Panel, April 29, 2014
  13. 13. Motivation for the 2014 Matchmaking App Challenge Researchers often ask how to find patients interested in collaborating. Patients and stakeholders may have an idea but not the research experience to bring it to fruition. Matchmaking facilitates bi-directional initiation of research partnerships. 13Patient Engagement Advisory Panel, April 29, 2014
  14. 14. Goals of the 2014 PCORI Matchmaking App Challenge Increase the ability for all user types – patient, stakeholder, researcher – to initiate a PCOR relationship. Build a self-sustaining online community interested in patient- centered outcomes research. Spread the method of patient engagement in research across the country. 14Patient Engagement Advisory Panel, April 29, 2014
  15. 15. PCORI Matchmaking App Challenge Polished, ready-to-publish apps Total Prizes: $150K • 1st Place: $100K (60/40 payment schedule) • 2nd Place: $35K • 3rd Place: $15K Must work with patients and/or stakeholders in product design 15Patient Engagement Advisory Panel, April 29, 2014
  16. 16. Required Features Facilitates creation of partnerships among all user types: researchers, stakeholder, patient Users must be able to self-select the user type(s) with which they primarily identify Internal (user-only) communication platform Ability to translate from English, or have a plan to translate the app into other languages Section 508 compliance Interoperability/ability to integrate with preexisting research networks (such as, clinicialtrials.gov, and the PCORnet CDRNs and PPRNs) A clear designation that participation in the application (web or mobile version) is voluntary and, therefore, disclosing personal medical information is the app user’s choice and responsibility 16Patient Engagement Advisory Panel, April 29, 2014
  17. 17. Suggested Features Social media integration for external networking Robust user profiles Advanced search options (e.g. geocoding) Customizable displays, which allows users to filter and display their network by category (disease condition, geography, individual. Consider the features LinkedIn uses to display existing relationships and suggested connections) An admin dashboard, which allows users to pull data about the reach and depth of their network An analytics dashboard, or feature, that other funders and research institutions could access to retrieve data and the existing network (displays such information as, where users access the network from, user concentration by geography, frequency of use, etc.) 17Patient Engagement Advisory Panel, April 29, 2014
  18. 18. Judging Criteria and Definitions Creativity: uniqueness and innovation in approach to fulfilling the mandatory requirements; the variety and value of additional features User interface and user experience (UI/UX): overall look and feel of various displays and ease of use of all features Evidence of co-design: the inclusion of patients and stakeholders in the app design and development process Sensitivity: demonstrated cultural awareness; consideration of the variety of potential users (PCORI’s priority populations) Incentive: impetus users have to download the app and return to use it frequently Past performance: evidence of the volume and quality of the app developer’s previous experience (judged only from the “Past Performance” slide in the .PDF submission) 18Patient Engagement Advisory Panel, April 29, 2014
  19. 19. Timeline Overview 19 Challenge Development Period  Challenge Launch Date March 17, 2014  PCORI Webinar for Promotion March 20, 2014  PCORI Webinar April 30, 2014  Application Submission Deadline Aug. 15, 2014 Judging Period  Virtual Judging Begins Aug.15, 2014  Judging Completed Aug. 31, 2014  Winner Announced Sept. 2014 Patient Engagement Advisory Panel, April 29, 2014
  20. 20. Questions? matchmaking@pcori.org www.pcori.org/pcorpartnerlist www.pcori.org/challenge 20Patient Engagement Advisory Panel, April 29, 2014
  21. 21. PCORI Principles of Compensation Parity Patient Engagement Advisory Panel, April 29, 2014 21 Compensation Parity Subcommittee Charlotte Collins, JD Sara van Geertruyden, JD Regina Greer-Smith, MPH, FACHE Lorraine Johnson, JD, MBA
  22. 22. PCORI Patient Engagement Rubric Time and contributions of patient partners are valued and demonstrated in fair financial compensation as well as reasonable and thoughtful time commitment requests. Patient Engagement Advisory Panel, April 29, 2014 22
  23. 23. Issues That Matter Who is compensated? Who is providing the compensation? For what level of activities? How much? Mandated or suggested? Patient Engagement Advisory Panel, April 29, 2014 23
  24. 24. Who Is Compensated Patients Caregivers Patient Organizations NOTE: Research subjects (study participants) are not included in this topic. Patient Engagement Advisory Panel, April 29, 2014 24
  25. 25. Cover Reasonable Expenses • Travel • Accommodation • Meals • Childcare • Internet/telephone • Conference fees • Training participation • Prompt, and even advance, reimbursement Patient Engagement Advisory Panel, April 29, 2014 25
  26. 26. Level of Activities I. Simply informing II. Consulting on decision III. Deciding together IV. Acting together V. Encouraging independent initiatives Patient Engagement Advisory Panel, April 29, 2014 26 Research Subject Fully Engaged Partner
  27. 27. Compensation Alignment with Activities Parity reflects - commitment dedicated time skills expertise  level of patient engagement expertise commensurate with contributions by other collaborators Patient Engagement Advisory Panel, April 29, 2014 27
  28. 28. Other Considerations Align with level of activities Flexible – consider choice Non-cash incentives Opt-Out Consult with the patient/caregiver/organization  Public benefits eligibility risk  Organization’s internal policies Formal contract Mandatory vs. permissive Patient Engagement Advisory Panel, April 29, 2014 28
  29. 29. Program Timeline 29 Task Timeline Welcome Inaugural Ambassadors – Patient Engagement Advisory Panel Saturday, September 21, 2013 Invite workshop attendees, advisory panelist, merit reviewers, and PCORI funded project partners to join the PCORI Ambassador Program September 24- October 1, 2013 Development and release of PCOR Science Training November 2013 Conduct six-month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Training Summer 2014 Conduct one-year program evaluation Fall 2014 Boxed Lunch Break Boxed Lunch is served in the Upper lobby foyer. We reconvene at 12:15 pm.
  30. 30. Discussion on “Patient” Definition, Privacy Issues, and other Questions Patient Engagement Advisory Panel, April 29, 2014 30 Compensation Parity Subcommittee Charlotte Collins, JD Sara van Geertruyden, JD Regina Greer-Smith, MPH, FACHE Lorraine Johnson, JD, MBA
  31. 31. PCORnet Update Jaye Bea Smalley National Urban Fellow and Special Assistant to the Chief Engagement and Dissemination Officer 31 Sarah Daugherty, PhD, MPH Senior Program Officer, CER Methods and Infrastructure April 29, 2014
  32. 32. PCORnet Update Revised Infrastructure Rubric PCORI Patient Engagement Webinars Strategic Portfolio Management The ENACT Tool Common Data Model Version 1.0 Update on Patient Engagement Activities 32
  33. 33. PCORI Network-Led Patient Engagement Webinars Building on recent feedback to create a continued dialogue and a sharing of promising practices, the goals for the engagement webinar series are to: Promote PCOR readiness Encourage the development and sharing of promising practices among PCORnet Foster collaboration among networks Identify existing resources Identify issues and challenges in patient-engaged network development 33
  34. 34. 34
  35. 35. PCORnet Patient Engagement Milestones 3.1 Description of patient roles and responsibilities in governance is developed and submitted to PCORI 3.2 Approaches for enhancing patient involvement in governance are developed and submitted to PCORI 3.3 Approved approaches for enhancing patient involvement in governance implemented 3.4 Report summarizing patient engagement activities is submitted to PCORI 3.5 Report summarizing patient engagement activities is submitted to PCORI 3.6 Report summarizing patient engagement activities is submitted to PCORI 3.7 Approaches for patients to ask and prioritize research questions are developed and submitted to PCORI 3.8 Approved approach for patients to ask and prioritize research questions is implemented 3.9 Approaches for enabling patients to communicate with each other are developed and submitted to PCORI 3.10 Approved approaches for enabling patients to communicate with each other are implemented 3.11 Approaches for enabling patients to receive research finding results are developed and submitted to PCORI 3.12 Approved approaches for enabling patients to receive research finding results are implemented 35
  36. 36. PCORnet Patient Engagement Milestones 4.11 Approaches for patients to securely extract their own data through EHRs and/or health claims data are developed and submitted to PCORI 4.12 Approved approaches for patients to securely extract their own data through EHRs and/or health claims data are implemented 36
  37. 37. Strategic Portfolio Management Monthly calls with awardee teams Quarterly progress reports Completion of ENACT tool is required as part of progress report Summative analysis at 6, 12, 18 months Site visits Monthly assessment of technical assistance provided 37
  38. 38. Engaging Patients in Infrastructure 38 Engage EvaluateEnhance
  39. 39. PCORnet ENACT Tool Protocol Integrate end-users into developing assessment tool, interpreting findings, and disseminating results  Patient and Consumer Engagement Task Force  Evaluation working group established Timing: Baseline and 6-month assessments Respondents: PI, lead patient representative, clinical partners Dissemination: aggregate results to network partners 39
  40. 40. PCORnet Common Data Model Version 1.0 Demographics  Date of birth  Sex  Race  Hispanic Enrollment data, including dates Encounter data, including inpatient and outpatient; visit type, provider type Vital signs  Weight  Length (0 to 2-3 y)  Height (2-3 + y)  Blood pressure, position taken Codes for diagnoses, procedures 40
  41. 41. Patient Engagement Advisory Panel, April 29, 2014 41 Thank you! Safe travels home!

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