advisory panel application, review, and selection process report … · 2015-08-17 · advisory...

Advisory Panel Application, Review, and Selection Process Report 2015

Contents I. Background .................................................................................................................................................................... 2

II. Open Call for Applications .............................................................................................................................................. 4

III. Reviewing Applications .................................................................................................................................................. 5

IV. Review and Approval by Board of Governors .............................................................................................................. 10

Appendix A: Advisory Panel Review Sheets .......................................................................................................................... 12

Appendix B: Advisory Panel Application Fields ..................................................................................................................... 19

Appendix C: Characteristics of Applicant Pool ...................................................................................................................... 31

Advisory Panel Application, Review, and Selection Process Report 2015 1

I. Background

The Patient-Centered Outcomes Research Institute (PCORI) is authorized by Congress to appoint permanent or ad hoc advisory panels, as determined appropriate. PCORI advisory panels do not serve in an official decision-making capacity, but their recommendations and advice are taken into consideration by our staff, Board, and Methodology Committee in modeling robust patient and stakeholder engagement efforts, refining and prioritizing specific research questions, providing other scientific or technical expertise, and providing input on other questions that may arise relevant to the Institute’s mission and work. Panels must include representatives from the following groups: practicing and research clinicians; patients; experts in scientific and health services research, health services delivery, and evidence-based medicine who have experience in the relevant topic; and, as appropriate, experts in integrative health and primary prevention strategies. Other members of the healthcare community may also be included, such as industry representatives and policy makers.

On December 3, 2013, PCORI’s Board of Governors (BOG) approved revised charters for the following advisory panels:

• Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options• Advisory Panel on Improving Healthcare Systems• Advisory Panel on Addressing Disparities• Advisory Panel on Patient Engagement

These revised charters indicated the introduction of staggered terms (one, two, or three years), which were assigned to each panelist and approved by the BOG in February 2014. Thus, members who were assigned a one-year term were rolling off these panels, and a call was made for candidates to apply to all four panels. Moving forward, as indicated in the panel charters, new members will serve three-year terms.

On April 21, 2015, PCORI’s BOG approved revised charters for the following advisory panels:

• Advisory Panel on Clinical Trials• Advisory Panel on Rare Disease

These revised charters were modified to match the above-mentioned four charters, and therefore introduced staggered terms, which then needed to be assigned to each member. Additionally, PCORI staff identified the need for an additional patient representative on the Advisory Panel on Rare Disease, so a call was made for candidates to apply to this panel. PCORI staff did not identify any openings for the Advisory Panel on Clinical Trials.

On January 27, 2015, PCORI’s Board of Governors (BOG) approved the charters for the new Advisory Panel on Communication and Dissemination Research. Thus, a call was made for candidates to apply to this panel.

This document summarizes the application and selection process that PCORI followed to fill panel openings. The openings are summarized in Table 1.

1 Available at pcori.org/get-involved/advisory-panels 2 Available at pcori.org/get-involved/advisory-panels


http://www.pcori.org/content/advisory-panel-assessment-prevention-diagnosis-and-treatment-options

http://www.pcori.org/content/advisory-panel-improving-healthcare-systems

http://www.pcori.org/content/advisory-panel-addressing-disparities

http://www.pcori.org/content/advisory-panel-patient-engagement

http://www.pcori.org/content/advisory-panel-clinical-trials

http://www.pcori.org/content/advisory-panel-rare-disease

http://www.pcori.org/content/advisory-panel-communication-and-dissemination-research


Table 1: Advisory Panel Openings in 2015

Advisory Panel Open Positions

Applicant Profile Length of Term

Assessment of Prevention, Diagnosis, and Treatment Options

Up to 4

Preference for the following stakeholder groups:

• Patients• Clinicians• Researchers• Industry

Applicants representing other stakeholder groups are also welcome to apply.

3 Years

Improving Healthcare Systems Up to 5


• Patients• Clinicians• Researchers• Payers


3 Years

Addressing Disparities Up to 6 No preference will be given to particular stakeholder

groups. 3 Years

Patient Engage-ment Up to 6


• Patients• Clinicians

3 Years

Rare Disease 1


• Patients


1 or 2 years

Communi-cation and Dissemina-tion Research

12 to 21 No preference will be given to particular stakeholder groups.

1, 2, or 3 years







http://www.pcori.org/content/pcoris-stakeholders




http://www.pcori.org/node/4000

















II. Open Call for Applications

An open call for applications was announced through our website, email communication, and other channels. PCORI reached out to previous applicants (from the 2014 cycle) to confirm their continued interest, and invited organizations to nominate new individuals and new candidates to apply.

The online application form took approximately 10 to 20 minutes to complete. It included a series of multiple-choice and open-form questions. Applicants were required to provide a personal statement (250 to 500 words) that clearly described their background, experience, degree to which expertise and background could improve our work, and reasons for applying. Applicants had the option to provide supportive documents (resume/curriculum vitae/list of relevant experience). See Appendix B: Advisory Panel Application Fields for a complete list of these fields. Applicants had the option to indicate if they wished to be considered for multiple panels and were prompted to rank selected panels in order of preference. This order was used in the event two or more advisory panel review teams wanted to select the same applicant.

PCORI also accepted third-party nominations. Any organization wishing to make nominations could submit a nomination letter, CV/resume of the nominee(s), and brief bio(s) and letters of endorsement. PCORI contacted nominees if additional information was needed. The deadline to submit third-party nominations was 5 p.m. ET on January 30, 2015 for all panels, except the inaugural panel on Communication and Dissemination Research where we provided more time to applicants. The deadline to submit third-party nominations for the Advisory Panel on Communication and Dissemination Research was February 16, 2015 at 5 p.m. ET.

Applications were considered if a completed application was received by 5 p.m. ET on February 6, 2015 for all panels, except the inaugural panel on Communication and Dissemination Research where again we provided more time to applicants. The deadline to submit a full application for the Advisory Panel on Communication and Dissemination Research was February 23, 2015 at 5 p.m. ET. Applicants who could not submit a complete application by the stated deadline, comply with PCORI’s conflict of interest policy, or attend the scheduled Advisory Panel spring 2015 meetings were excluded from consideration.

As shown in Figure 1, the pool of candidates in this cycle of selection included 770 individuals, including 52 third-party nominations.

See Appendix C: Characteristics of Applicant Pool for additional details.


Figure 1: Characteristics of Candidate Pool

Reviewing Applications

PCORI reviewed all applications and nominations with an eye toward developing balanced, inclusive panels. The review process was divided into three tiers, shown in Figure 2. This open, transparent, and rigorous process achieved the desired balance between expertise and demographics on each panel. Alternates were also selected to be nominated in the event one or more of the proposed panelists declined PCORI's invitation to serve on one of the advisory panels.

Figure 2: Three-Tiered Review Process


Review Teams

Each advisory panel support staff developed advisory panel review teams. Each team had diverse PCORI representation. To mitigate potential conflicts of interest, team members were required to recuse themselves from evaluation of any applicants with whom they had a close professional or personal association. Each application was reviewed by at least two staff members. Team members are listed below by panel and tier.

Advisory

Panel Tier 1

Review Team Tier 2

Review Team Tier 3

Review Team Assessment of Prevention, Diagnosis, and Treatment Options

Yen-Pin Chiang Associate Director,

Clinical Effectiveness Research, PCORI

Kim Bailey Engagement Officer, Engagement, PCORI

Diane Bild Senior Program Officer,

Clinical Effectiveness Research, PCORI Jana Lynn Louis

Program Associate, Clinical Effectiveness Research, PCORI

Julie McCormack Program Officer, Clinical

Effectiveness Research, PCORI Sandi Myers

Program Assistant, Clinical Effectiveness Research, PCORI

Stanley Ip Senior Program Officer, Clinical Effectiveness Research, PCORI

Danielle Whicher Program Officer, Clinical

Effectiveness Research, PCORI Anne Trontell

Senior Program Officer, Clinical Effectiveness Research, PCORI

Yen-Pin Chiang Associate Director, Clinical

Effectiveness Research, PCORI

Kim Bailey Engagement Officer, Clinical Effectiveness

Research, PCORI Diane Bild

Senior Program Officer, Clinical Effectiveness

Research, PCORI Jana Lynn Louis

Program Associate, Clinical Effectiveness Research, PCORI

Julie McCormack Program Officer, Clinical Effectiveness

Research, PCORI Sandi Myers

Program Assistant, Clinical Effectiveness Research, PCORI

Stanley Ip Senior Program Officer, Clinical Effectiveness Research, PCORI

Danielle Whicher Program Officer, Clinical Effectiveness

Research, PCORI Anne Trontell

Senior Program Officer, Clinical Effectiveness Research, PCORI

David Hickam Program Director, Clinical

Effectiveness Research, PCORI


Improving Healthcare Systems

Lauren Azar Senior Program Associate,

Improving Healthcare Systems, PCORI Annie Bollini

Senior Merit Review Officer, Merit Review, PCORI

Ashton Burton Contracts Specialist, Pre-

Award, Contracts Management and

Administration Alex Hartzman

Program Associate, Improving Healthcare Systems, PCORI

Kaitlin Hayes Intern, Improving Healthcare

Systems, PCORI Hannah Kampmeyer Senior Administrative Assistant, Improving

Healthcare Systems, PCORI

Neeraj Arora Program Officer, Improving Healthcare Systems, PCORI

Lynn Disney Senior Program Officer, Improving

Healthcare Systems, PCORI Penny Mohr

Program Officer, Improving Healthcare Systems, PCORI

Steven Clauser Program Director, Improving Healthcare Systems, PCORI

Addressing Disparities

Ayodola Anise

Program Officer, Addressing Disparities, PCORI

Mira Greiser Program Officer, Addressing

Disparities, PCORI Katie Lewis

Senior Program Associate, Addressing Disparities, PCORI

Mychal Weinert

Program Associate, Addressing Disparities, PCORI

Ayodola Anise Program Officer, Addressing

Disparities, PCORI Mira Greiser

Program Officer, Addressing Disparities, PCORI

Katie Lewis Senior Program Associate,

Addressing Disparities, PCORI Mychal Weinert

Program Associate, Addressing Disparities, PCORI

Romana Hasnain-Wynia

Program Director, Addressing Disparities,

PCORI


Patient Engagement


Michelle Johnson-Fleece Engagement Officer, Engagement, PCORI

Aingyea Kellom

Program Associate, Patient Engagement, PCORI

Shivonne Laird Engagement Officer, Engagement, PCORI

Sue Sheridan Director, Patient

Engagement, PCORI Suzanne Schrandt

Deputy Director, Patient Engagement, PCORI

Makina Table Program Associate,

Patient Engagement, PCORI

Melanie Thompson Senior Program

Assistant, Patient Engagement, PCORI


Michelle Johnson-Fleece Engagement Officer, Engagement, PCORI

Aingyea Kellom

Program Associate, Patient Engagement, PCORI

Shivonne Laird Engagement Officer, Engagement, PCORI

Sue Sheridan Director, Patient Engagement,

PCORI Suzanne Schrandt

Deputy Director, Patient Engagement, PCORI

Makina Table Program Associate,

Patient Engagement, PCORI

Melanie Thompson Senior Program

Assistant, Patient

Sue Sheridan

Director, Patient Engagement, PCORI

Rare Disease Emma Djabali Program Associate, Office of the

Chief Science Officer, PCORI Lia Hotchkiss

Director, Eugene Washington Engagement Awards, PCORI

Aingyea Kellom Program Associate, Patient

Engagement, PCORI Greg Martin

Deputy Director, Stakeholder Engagement, PCORI

Kara Odom Walker Deputy Chief Science Officer, PCORI

Meheret Shumet Administrative Assistant, Office of

the Chief Science Officer, PCORI Victoria Szydlowski

Program Associate, Evaluation and Analysis, PCORI

Dan Tisch Manager, Science Operations,

PCORI Sarita Wahba

Program Officer, Comparative Effectiveness Research Methods

and Infrastructure, PCORI

Emma Djabali Program Associate, Office of the Chief

Science Officer, PCORI Lia Hotchkiss

Director, Eugene Washington Engagement Awards, PCORI

Aingyea Kellom Program Associate, Patient

Engagement, PCORI Greg Martin

Deputy Director, Stakeholder Engagement, PCORI

Kara Odom Walker Deputy Chief Science Officer, PCORI

Meheret Shumet Administrative Assistant, Office of the

Chief Science Officer, PCORI Victoria Szydlowski

Program Associate, Evaluation and Analysis, PCORI

Dan Tisch Manager, Science Operations, PCORI

Sarita Wahba Program Officer, Comparative

Effectiveness Research Methods and Infrastructure, PCORI

Ayodola Anise Program Officer,

Addressing Disparities, PCORI

Bryan Luce Chief Science Officer, PCORI

Kara Odom Walker Deputy Chief Science Officer,

PCORI Danielle Whicher

Program Officer, Comparative Effectiveness

Research Methods and Infrastructure, PCORI


Communication and Dissemination Research

Sarah Chew Program Assistant,

Communication and Dissemination Research,

PCORI Yen-Pin Chiang

Associate Director, Clinical Effectiveness

Research, PCORI Bridget Gaglio Program Officer,


PCORI Chris Gayer

Program Officer, Communication and Dissemination Research, PCORI

Michelle Henton Program Associate,


PCORI Shivonne Laird

Engagement Officer, Engagement, PCORI Kim Marschhauser

Merit Review Officer, Merit Review, PCORI

Program Officer, Communication and

Dissemination Research, PCORI

Bridget Gaglio Program Officer,


PCORI Chris Gayer

Program Officer, Communication and Dissemination Research, PCORI

Sarah Greene Senior Program Officer, CER Methods and Infrastructure

Program, PCORI Michelle Henton Program Associate,


PCORI Kim Marschhauser

Merit Review Officer, Merit Review, PCORI

Jean Slutsky Chief Engagement and Dissemination

Officer

Selection Criteria

Selection criteria were used to evaluate an applicant’s experience and ability to contribute to each panel’s specific scope of work. The strength of a candidate’s articulated background, experience, the degree to which expertise and background could improve PCORI’s work, and reasons for applying to serve on a specific panel were evaluated in reference to the other applicants.

Tier 1: Applicants were reviewed against a common set of criteria (see Appendix A: Advisory Panel Review Sheets) built to evaluate each applicant’s basic merit and potential value to PCORI. Using the grading scale shown below, each team member attributed one of three tags, “Yes,” “No,” or “Maybe,” to each application they reviewed.

Grading Scale (points) Tags >27 Yes

12 to 27 Maybe <12 No

Since each application was reviewed by two review team members, each application was attributed two tags to determine which applications would be reviewed in Tier 2:

Tag 1 Tag 2 Application to Tier 2? (Y/N) Yes Yes Y


Yes Maybe Y Yes No N

Tier 2: Applicants were reviewed against panel-specific sets of criteria (see Appendix A: Advisory Panel Review Sheets). In the interest of consistency, different sets of criteria were established for each stakeholder group. We recognize that individuals from all stakeholder categories offer valuable perspectives and expertise to contribute to the work of the advisory panels, and applicants from each group also embody differing competencies that cannot be compared between groups. Since each application was reviewed by two review team members, each application was attributed two tags to determine which applications would be reviewed in Tier 3:

Tag 1 Tag 2 Application to Tier 3? (Y/N) Yes Yes Y Yes Maybe N Yes No N

Tier 3: Balancing criteria were used during Tier 3 of the review process to evaluate each applicant’s experience and ability to contribute to each panel’s specific scope of work. We thoroughly reviewed each application and evaluated each applicant holistically, seeking geographic, institutional, racial, experiential, and gender diversity. Although complete sociodemographic information was not required of each applicant, such information, when provided, was considered when accounting for balance and representation of diverse populations. The review teams sought to ensure that potential nominees reflected a fair representation of minority or underrepresented patient populations, including patients with rare conditions or diseases.

The review teams identified 47 prospective panelists and 19 alternate candidates across all 6 panels. The number of proposed and alternative panelists per panel is shown below.

Advisory Panel Number of Proposed

Panelists Number of Alternates


4 4

Improving Healthcare Systems 6 5 Addressing Disparities 7 4 Patient Engagement 7 2 Communication and Dissemination Research

21 3

Rare Disease 2 1

III. Review and Approval by Board of Governors

The names of proposed panel members and alternate panel members were submitted to PCORI’s Board of Governors for review and approval during public webinar/teleconferences held on April 21, 2015. The proposed panels were approved by the Board. Selected nominees were informed of their nomination and given time to accept or decline. They all accepted. Appendix D: Diversity of PCORI's Advisory Panels


summarizes the diversity of each panel.3

The Communication and Dissemination and Rare Disease support staff made decisions regarding the term length of each of the new panelists. The only guideline was that the panels should always remain diverse and balanced and respect the terms of the charters. With these objectives in mind, panelists were appointed to staggered terms of one, two, or three years. All other new panelists were appointed to three-year terms.


Appendix A: Advisory Panel Review Sheets

Tier 1 Review Sheet: Basic Merit and Potential Value to PCORI

Criteria Grading 1 2 3 4

Total

Quality of Personal Statement or Letter

of Nomination

Uniqueness Weak Average Strong Very Strong

Clarity Weak Average Strong Very Strong

Expressed commitment Weak Average Strong Very Strong

Potential to Contribute to

PCORI’s Mission

Understanding of PCORI’s mission Weak Average Strong Very Strong Interest in PCOR Weak Average Strong Very Strong

Communication and feedback pathways into community Weak Average Strong Very Strong

Familiarity or training in scientific research methods1 Weak Average Strong Very Strong

Experience in patient/stakeholder engagement Weak Average Strong Very Strong Experience in research prioritization exercises Weak Average Strong Very Strong

Quality of Nomination

(If such documents are included in

application)

Does the nominating organization represent a key constituency? No = 0 Yes = 1

Is the nominating organization relevant to the Advisory Panel’s subject matter? No = 0 Yes = 1

Is the scope of the nominating organization’s reach into its segment of the healthcare community significant? No = 0 Yes = 1

Total

Rating Summary (1-2 Sentences)


Tier 2 Review Sheet: Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options

Assessment of Prevention,

Diagnosis, and Treatment

Options Stakeholders

Criteria Grading

Patient Representative

Experience in implementing engagement strategies regarding clinical problems for which there are treatment options Weak Average Strong Very Strong

Researcher

Experience in comparative effectiveness research Weak Average Strong Very Strong Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Experience in research methodology Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence about CER Weak Average Strong Very Strong Experience in evidence-based medicine Weak Average Strong Very Strong

Experience in primary prevention Weak Average Strong Very Strong

Clinician

Experience in comparative effectiveness research Weak Average Strong Very Strong Experience in clinical applications of CER Weak Average Strong Very Strong

Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Experience in implementing change in CER Weak Average Strong Very Strong Experience in research methodology Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence about CER Weak Average Strong Very Strong Experience practicing medicine Weak Average Strong Very Strong

Other Stakeholders

Familiarity with or experience in comparative effectiveness research Weak Average Strong Very Strong

Experience in clinical quality improvement Weak Average Strong Very Strong

Experience in implementing change in CER Weak Average Strong Very Strong


Decision YES ALTERNATE NO


Tier 2 Review Sheet: Advisory Panel on Improving Healthcare Systems

Improving Healthcare Systems Stakeholders Criteria Grading

Patient Representative Experience in developing partnerships and engagement strategies in health care Weak Average Strong Very Strong

Researcher

Familiarity or training in health services research Weak Average Strong Very Strong

Experience in conducting health services research Weak Average Strong Very Strong Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Experience in implementing change in healthcare systems Weak Average Strong Very Strong Experience in developing partnerships and engagement strategies in health care Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence about IHS Weak Average Strong Very Strong Experience in evidence-based medicine Weak Average Strong Very Strong

Experience in primary prevention Weak Average Strong Very Strong

Clinician

Familiarity or training in health services research Weak Average Strong Very Strong

Experience in conducting health services research Weak Average Strong Very Strong Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Experience in implementing change in healthcare systems Weak Average Strong Very Strong Experience in developing partnerships and engagement strategies in health care Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence about IHS Weak Average Strong Very Strong Experience practicing medicine Weak Average Strong Very Strong

Other Stakeholders

Familiarity with or experience in health services research Weak Average Strong Very Strong

Experience in developing partnerships and engagement strategies in health care Weak Average Strong Very Strong Experience in implementing change in healthcare systems Weak Average Strong Very Strong

Expertise in health services delivery Weak Average Strong Very Strong Potential to identify important gaps in existing evidence about IHS Weak Average Strong Very Strong




Tier 2 Review Sheet: Advisory Panel on Addressing Disparities

Stakeholder Group Criteria Grading

Patient/Caregiver Representative

Familiarity or experience with disparities populations and/or disparities research Weak Average Strong Very Strong Experience in developing partnerships and engagement strategies Weak Average Strong Very Strong

Lived experience that could help inform discussion Weak Average Strong Very Strong

Researcher


Experience in measuring patient-centered outcomes Weak Average Strong Very Strong Experience implementing change in healthcare disparities Weak Average Strong Very Strong

Experience in research methodology Weak Average Strong Very Strong Potential to identify important gaps in existing evidence about disparities Weak Average Strong Very Strong

Experience in evidence-based medicine Weak Average Strong Very Strong Experience in primary prevention Weak Average Strong Very Strong

Clinician


Experience in measuring patient-centered outcomes Weak Average Strong Very Strong Experience in implementing change in healthcare disparities Weak Average Strong Very Strong

Experience in research methodology Weak Average Strong Very Strong Potential to identify important gaps in existing evidence about disparities Weak Average Strong Very Strong

Experience practicing medicine (specifically in safety-net communities) Weak Average Strong Very Strong

Other Stakeholders


Experience in implementing change in healthcare disparities Weak Average Strong Very Strong Potential to identify important gaps in existing evidence about disparities Weak Average Strong Very Strong




Tier 2 Review Sheet: Advisory Panel on Patient Engagement

Criteria Grading

Is the candidate a current patient partner in a PCORI-funded project? Yes No

Experience in patient engagement in research or Patient-Centered Outcomes Research Weak Average Strong Very Strong

Established communication and feedback pathways into his/her community Weak Average Strong Very Strong

Potential to contribute to the purpose of the Advisory Panel Weak Average Strong Very Strong

Involvement in the development of patient-centered clinical trials Weak Average Strong Very Strong

Involvement in the development of processes or frameworks that involve multi-stakeholders in patient-centered research Weak Average Strong Very Strong

Involvement in a data research network and data sharing/privacy policy development Weak Average Strong Very Strong




Tier 2 Review Sheet: Advisory Panel on Communication and Dissemination Research

Communication and Dissemination

Stakeholders Criteria Grading

Patient Representative Experience in developing partnerships and engagement strategies in health care Weak Average Strong Very Strong

Familiarity of health communication issues Weak Average Strong Very Strong

Researcher

Experience in comparative effectiveness research Weak Average Strong Very Strong Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Experience in research methodology Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence about communication and dissemination research Weak Average Strong Very Strong

Experience in health literacy, numeracy, and/or risk communication Weak Average Strong Very Strong Experience in dissemination and implementation research Weak Average Strong Very Strong

Experience in decision sciences with understanding or experience with decision aids and/or tools Weak Average Strong Very Strong

Clinician

Experience in comparative effectiveness research Weak Average Strong Very Strong Experience in clinical applications of communication and dissemination research Weak Average Strong Very Strong

Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Experience in implementation science Weak Average Strong Very Strong Experience in research methodology Weak Average Strong Very Strong

Experience with shared decision making Weak Average Strong Very Strong Potential to identify important gaps in existing evidence about communication and

dissemination research Weak Average Strong Very Strong

Experience practicing medicine Weak Average Strong Very Strong

Other Stakeholders

Familiarity with or experience in comparative effectiveness research Weak Average Strong Very Strong

Familiarity with or experience in communication and dissemination research Weak Average Strong Very Strong

Experience in developing partnerships and engagement strategies in health care Weak Average Strong Very Strong

Experience in implementing change in healthcare systems as it relates to communication and dissemination research Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence about communication and dissemination research Weak Average Strong Very Strong




Tier 2 Review Sheet: Advisory Panel on Rare Disease

Rare Disease Criteria Grading

Patient Representative Experience implementing engagement strategies in rare disease communities Weak Average Strong Very Strong

Familiarity with or experience with rare disease communities and/or rare disease research Weak Average Strong Very Strong

Technical Expert

Experience with scientific and health services research on rare diseases Weak Average Strong Very Strong Experience in measuring patient-centered outcomes Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence in rare diseases Weak Average Strong Very Strong

Experience in implementing change in healthcare systems Weak Average Strong Very Strong Experience in evidence-based medicine Weak Average Strong Very Strong Experience in the life sciences industry Weak Average Strong Very Strong

Other Stakeholder

Familiarity with or experience with rare disease communities and/or rare disease research Weak Average Strong Very Strong Experience in implementing change in healthcare systems Weak Average Strong Very Strong

Potential to identify important gaps in existing evidence in rare diseases Weak Average Strong Very Strong

Experience in integrative health and primary prevention strategies Weak Average Strong Very Strong




Appendix B: Advisory Panel Application Fields

Field Question Type

Answer Options (if applicable) Required/ Optional

First Name Text Box Required Middle Initial Text Box Required Last Name Text Box Required Address Text Box Required City Text Box Required Zip Code Text Box Required State/Province/Region Multiple

Choice Required

Country Multiple Choice

Required

Primary Phone Number Text Box Required Alternate Phone Number Text Box Optional Primary E-mail Address Text Box Required Secondary E-mail Address Text Box Optional Assistant Contact Information

• Full Name• Email Address• Phone Number

Text Box Optional

Gender Multiple Choice

• Female• Male• Prefer not to disclose

Required

Age in Years Multiple Choice

• Under 25• 25 to 49• 50 to 64• 65 +• Prefer not to disclose

Required

Race/Ethnicity Multiple Choice

• Asian/Pacific Islander• Black/African-American• Caucasian/White• Native American/Alaska

Native• Other/Multi-Racial• Prefer not to disclose

Required

Are you Hispanic/Latino? Multiple Choice

• Yes• No• Prefer not to disclose

Required

Current Employer Text Box Required Current Position Text Box Required


Are you currently employed by the federal government? Note: For the United States, this includes dual appointments with VA hospitals.

Multiple Choice

• Yes• No

Required


Are you a United States citizen?

Multiple Choice

• Yes• No

Required

Are you a resident of the United States?

Multiple Choice

• Yes• No

Required

What is your highest level of education?

Multiple Choice

• High School (1-4years, no degree)

• High SchoolDegree (orequivalent)

• Some College (1-4 years, nodegree)

• Associate’sDegree (includingoccupational oracademicdegrees)

• Bachelor’s Degree(BA, BS, AB, etc.)

• Master’s Degree(MA, MS, MENG,MSW etc )

Required

Indicate the groups with which you identify OR represent. This list represents "hard-to-reach" or lesser-studied populations. PCORI respects your decision to omit an answer to this question.

Multiple Choice

• Racial and ethnicminority groups

• Low-income groups• Women• Older adults

(age 65 andolder)

• Residents of ruralareas

• Individuals withspecialhealthcareneeds, includingindividuals withdisabilities

• Individuals withmultiple chronicdiseases

• Individualswith rarediseases

• Individuals whosegenetic makeupaffects their

Optional


Which disease/condition area do you represent?

Multiple Choice

• Allergies/Immune Disorders

• Blood Disorders • Cancer • Cardiovascular Health • Dental Health • Dermatology • Digestive Disorders • Ear/Nose/Throat

Diseases • Eye Diseases • Genetic Disorders/Rare

Diseases • Infectious Diseases • Kidney Disease • Liver Diseases • Mental/Behavioral

Health • Muscular/Skeletal

Health • Nervous System

Disorders • Nutritional/Metabolic

Disorders

Required

Indicate the advisory panel(s) for which you are applying.

Multiple Choice

• Addressing Disparities

• Improving Healthcare Systems

• Assessment of Prevention, Diagnosis, and Treatment Options

• Patient Engagement

Required

Please rank your order of preference for the panels on which you would like to serve

Interface Answers to previous question

Required


Indicate the categories with which you identify. Select all that apply

Multiple Choice

• Patient/Consumer• Caregiver/Family Member of Patient• Patient/Caregiver

Advocate/AdvocacyOrganization

• Clinician (e.g., nurse, physician,or an organization thatrepresents clinicians)

• Hospital/Health System (e.g.,federally qualified health center[FQHC], rural health clinic, or anorganization that representshospitals/health systems)

• Purchaser (e.g., employer or anorganization that representspurchaser)

• Payer (e.g., health insurer, Medicaid,or an organization that representspayers)

• Industry (e.g., device orpharmaceutical manufacturer, oran organization that representsindustry)

Required

Indicate the categories of "Caregiver" with which you identify. Select all that apply.

Multiple Choice

• Spouse of Patient• Parent of Patient• Child of Patient• Other (please specify)

Optional

Indicate the categories of "Clinician" with which you identify. Select all that apply.

Multiple Choice

• Primary Care Physician• Specialty Physician• Nurse• Nurse Practitioner• Physician Assistant• Mental Health

Professional• Physical Rehabilitation Specialist• Organization Representing Clinicians• Other (please specify)

Optional

Indicate the categories of "Hospital/Health System" with which you identify. Select all that apply.

Multiple Choice

• Public Hospital• Private Hospital• Public Health System• Private Health System• Community Health

Center/FQHC/FQHC look-alike

Optional


• Other Safety-Net Clinic • Urgent Care • Retail Health Center • Organization Representing

Hospitals/Health Systems • Other (please specify)

Indicate the categories of "Purchaser" with which you identify. Select all that apply.

Multiple Choice

• Large Employer (50 employees or more)

• Small Employer (fewer than 50 employees)

• Regional, State, or Local Business Coalition

• National Business Coalition

• Other (please specify)

Optional

Indicate the categories of "Payer" with which you identify. Select all that apply.

Multiple Choice

• Private Health Insurer • Public Health Insurer • Organization Representing

Payers • Other (please specify)

Optional

Indicate the categories of "Industry" with which you identify. Select all that apply.

Multiple Choice

• Devices • Diagnostics • Durable Medical

Equipment • Health Services Consulting • Pharmaceutical • Organization Representing

Industry • Other (please specify)

Optional

Indicate the categories of "Health Research" with which you identify. Select all that apply.

Multiple Choice

• Academic Research • Research in Government

Setting • Private Research

Institution • Research in Other Setting • Organization Representing

Researchers • Other (please specify)

Optional


Indicate the categories of "Policy Maker" with which you identify. Select all that apply.

Multiple Choice

• US Congress (member orstaff)

• State Legislature• State Legislative Staff• State Executive Agency• Local Government• Organization Representing

Policy Makers• Other (please specify)

Optional

Indicate the categories of "Training Institution" with which you identify. Select all that apply.

Multiple Choice

• Academic Medical Center• Nursing School• Other Health Profession

Institution• Residency Program• Organization Representing

Training• Other (please specify)

Optional

Indicate the community that you would primarily represent on the advisory panel(s) for which you are applying.

Multiple Choice

• Patient/Consumer• Caregiver/Family Member

of Patient• Patient/Caregiver

Advocacy Organization• Researcher• Clinician• Hospital/Health System• Purchaser• Payer• Industry• Policy Maker• Training Institution

Required


Indicate the community that you would primarily represent on the Advisory Panel on Clinical Trials.

Multiple Choice

• Patient• Caregiver/Family Member• Patient/Caregiver

Advocacy Organization• Clinical Trialist• Epidemiologist• Biostatistician• Medical Informaticist• Expert in Ethical

Dimensions of ClinicalTrials

• Practicing/ResearchClinician

• Expert in Scientific andHealth Services Research

• Expert in Health ServicesDelivery

• Expert in IntegrativeHealth and PrimaryPrevention Strategies

• Medical TechnologyExpert (pharmaceutical,device, etc.)

Required if “Clinical Trials”

was selected

Indicate the community that you would primarily represent on the Advisory Panel on Rare Disease.

Multiple Choice

• Rare-Disease Patient• Caregiver/Family Member

of Rare-Disease Patient• Rare-Disease

Patient/CaregiverAdvocacy Organization

• Practicing/ResearchClinician

• Expert in Scientific andHealth Services Research

• Expert in Health ServicesDelivery

• Expert in Evidence-BasedMedicine

• Expert in IntegrativeHealth and PrimaryPrevention Strategies

• Insurers• Member of the Life

Sciences Industry• Representatives of

Employers• Policy Makers

Required if “Rare Disease” was selected


Have you been engaged in PCORI-funded research?

Multiple Choice • Yes • No

Required if applying to the Advisory Panel on Patient Engagement

Please describe your involvement. Text Box Required if answered “Yes” to previous question

Have you been involved in the development of patient-centered clinical trials?




Have you been a participant in a clinical trial?




Have you been involved in the development of processes or frameworks that involve multi-stakeholders in patient-centered research?




Have you been involved in a data research network and data sharing/privacy policy development?





Include professional societies, and other organizations relevant to PCORI's mission, as well as trade associations of which your employer is a member.

Text Box Optional

Have you previously been involved with PCORI? Select all that apply.

Multiple Choice

• Joined PCORI email list• Visited PCORI's website• Participated in applicant

training• Watched PCORI webinar• Attended PCORI

sponsored event in-person• Attended an event where

PCORI was featured• Met with PCORI staff• Met with a

PCORIAmbassador

• Applied to be a reviewerof PCORI research fundingapplications

• Applied for PCORIresearch funding

• Received PCORIResearch Funding

• Served as a PCORIMerit Reviewer

• Participated in a PCORIAdvisory Panel

• Other (please specify)• None of the above

Required

If selected for an Advisory Panel, will you agree to abide by PCORI's Conflict of Interest Policy and to publicly disclose any potential conflicts?

Multiple Choice

• Yes• No

Required


Please download the PCORI Conflict of Interest form. Complete the form and rename the file with your full name. Then “Browse” and select the form. Then click “Upload” before you proceed with the remainder of this application form.

File Upload

Required if answered “Yes” to previous question

Personal Statement Please provide a personal statement (up to 500 words) that explains your interest in becoming a member of a PCORI Advisory Panel and your commitment to PCORI’s mission and goals. Please describe your experiences or accomplishments that motivated you to support PCORI’s work in this area, sharing why you want to be involved with PCORI. You will only be able to submit one personal statement, even if you are applying for more than one panel.

Text Box or File Upload

Required

Please provide an additional statement (up to 100 words) explaining why you would like to be a part of the Advisory Panel(s) you are applying to and what you are looking forward to gain from the experience.*

Text Box Required

If selected to serve on one of PCORI’s Advisory Panels, would you be able to attend a one- to two-day meeting during the week of May 25, 2015?

Multiple Choice • Yes• No

Required


http://www.pcori.org/assets/2014/03/PCORI-COI-Policy-and-Disclosure-Statement-Form-INSERT-NAME.pdf

http://www.pcori.org/assets/2014/03/PCORI-COI-Policy-and-Disclosure-Statement-Form-INSERT-NAME.pdf

With panelists' permission, PCORI includes their bios on our website to highlight the diversity of expertise our panelists offer and how this experience is relevant to each panel’s scope of work. If you are selected, do you permit PCORI to post this to our website?

Multiple Choice

• Yes• No

Required

Please include a bio here. Each bio should be 100 to 150 words long and written in the third person. Please touch on the experiences or accomplishments that motivated you to support PCORI’s work in this area, sharing why you want to be involved with PCORI. To use as reference, here is a link to PCORI's Board of Governors webpage, which includes a bio for each member.

Text Box Required

Please provide any of the following supportive documents: resume/curriculum vitae/list of relevant experience. You can upload up to 3 documents.

File Upload Optional

Please tell us anything else that would help PCORI consider your qualifications as a potential member of an Advisory Panel.

Text Box Optional


http://www.pcori.org/about-us/governance-and-leadership/leadership/board-of-governors/

Appendix C: Characteristics of Applicant Pool

The pool of candidates in this cycle of selection included 770 individuals. However, since applicants had the option to apply to multiple advisory panels, some applications were reviewed more than once, adding up to a total of 1,434 application reviews.

Applicant Pool by Panel

Advisory Panel Number of Applicants


322

Improving Healthcare Systems 330 Addressing Disparities 247

Patient Engagement 288

Communication and Dissemination Research

135

Rare Disease 112

Applicant Pool Demographics

*Census regions and divisions of the United States made available by the US Census Bureau,US Department of Commerce, Economics and Statistics Administration


Appendix D: Diversity of PCORI’s Advisory Panels All Advisory Panels Combined


Individual Advisory Panels


advisory panel application, review, and selection process report … · 2015-08-17 · advisory...

Documents