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Research ArticleOriginal Research

Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks

Mary Fisher, Sarah E. Brewer, John M. Westfall, Matthew Simpson, Linda Zittleman, Sean T. O'Leary, Douglas H. Fernald, Andrea Nederveld and Donald E. Nease
The Journal of the American Board of Family Medicine September 2019, 32 (5) 663-673; DOI: https://doi.org/10.3122/jabfm.2019.05.190038
Mary Fisher
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
MPH
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Sarah E. Brewer
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
MPA
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John M. Westfall
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
MD, MPH
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Matthew Simpson
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
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Linda Zittleman
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
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Sean T. O'Leary
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
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Douglas H. Fernald
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
MA
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Andrea Nederveld
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
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Donald E. Nease Jr
From the Department of Family Medicine, University of Colorado, Aurora, CO (MF, SEB, JMW, MS, LZ, DHF, AN, DEN); Adult and Child Consortium for Health Outcomes Research and Delivery Science, Aurora, CO (SEB, STO, DEN); Department of Pediatrics, University of Colorado, Aurora, CO (STO).
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    Table 1.

    SNOCAP Advisory Groups, History, Membership, and Staffing

    SNOCAP NetworkAdvisory Group NamePractice Type/ LocationPBRN FoundedYear Advisory Group StartedMembers in Advisory GroupStaffing
    HPRNC.A.C.Rural; Eastern Colorado1997200315 + 5 staffDirector, co-director, plus 3 local practice facilitators/ liaisons
    CaReNetPACFederally Qualified Health Centers and Family Medicine Residency Locations; front range and San Luis Valley1998200413 + 3 staffDirector, co-director, coordinator
    COCONetNABPediatric and child health focused practices; statewide2011201613 + 2 staffDirector, associate director
    PEACHnetRABRural; Western Colorado20172019Up to 10 members recruited in 2019 + 2 staffDirector, professional research assistant
    • C. A. C., Community Advisory Council; CaReNet, Colorado Research Network; COCONet, Colorado Children's Outcomes Network; HPRN, High Plains Research Network; NAB, Network Advisory Board; PAC, Patient Advisory Council; PBRN, Practice-based Research Network; PEACHnet, Partners Engaged in Achieving Change in Health; RAB, Regional Advisory Board; SNOCAP, State Networks of Colorado Ambulatory Practices and Partners.

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    Table 2.

    SNOCAP Advisory Groups' Structures, Compensation, and Member Activities

    PBRNMeeting Frequency and LocationAdvisory Group Term LimitAdvisor SustainabilityMember Compensation ApproachesStaff CommunicationOther Non-Advisory Group Work
    HPRN C.A.C.Quarterly, meet in various locations around Eastern Colorado to accommodate the many locations of C.A.C. members.HPRN C.A.C. members have no set term; they get to choose whether or not they wish to continue with the group.Members are supported financially, and with other incentives such as travel and sharing work through publications and presentations. Membership makeup is regularly assessed to ensure all voices needed are at the table. Staff regularly checks in with members to gauge interest. Interest topics are regularly assessed and prioritized based on perceived need of the C.A.C.Compensation is provided for specific projects as often as possible. Amounts vary depending on scope of work and duration of project. Compensation is included in the project budget, and the payment amount is discussed with the PAC before the project begins. Members are reimbursed for mileage and hotel (if needed) expenses and provided breakfast and lunch at each meeting.Mainly by Co-Director; regular emails to discuss meeting logistics, meeting notes, calls for input and feedback.NAPCRG, PACE group at NAPCRG,18 presentations at yearly Convocation of ECER, and attendance and presentations at a variety of other local and national meetings
    Phone calls are held between in-person meetings as needed for general and project-specific purposes.
    CaReNet PACBi-monthly meetings on University campus in a building with free visitor parking; the location was determined by PAC members for convenience.
    In 2015, PAC members asked to meet regularly every two months to suggest and discuss health priority topics and to enjoy each other's company and share stories. During busy project periods, they may meet more frequently.
    PAC members have no service term limit, and thus far have only left due to major life transitions or death.Members are supported financially, and with other incentives such as travel and sharing work through presentations. The PAC regularly shares stories to seek help and advice from the group. The PAC discusses which topics are of need for their friends, family, and community.PAC members are paid a $30 grocery store gift card for each meeting they attend. The amount remains steady for each regular PAC meeting. When working on a research project, compensation is included in the project budget, and the payment amount is discussed with the PAC before the project begins.Mainly by coordinator, covering regular emails to discuss meeting logistics, meeting notes, calls for input and feedback.NAPCRG, PACE, presentations at yearly Convocation or ECER
    COCONet NABLoosely scheduled, bi-annual or quarterly dependent on network needs; Meetings held on University campus where COCONet staff work, per community members request.Board members made an original 3 year commitment to the board and commitments are renewable as desired by the members. Recruitment of new members is dependent upon the completion of existing members' terms and is conducted in collaboration with board members to determine the right fit for newly recruited members.Sustainability is ensured through a combination of the commitments of members and administrative management through COCONet staff.Stipend provided in launch year, additional compensation when available from administrative sources or grant funds. NAB payment process and considerations discussed in further detail.34 Members are provided a meal with each meeting and members traveling from outside the metro area receive mileage reimbursement.By Associate Director; to manage email discussions, seek feedback, and plan meeting logistics, agenda, notes, and follow up.Co-presenters at conferences, including the NAPCRG and NAPCRG PBRN annual meetings, ECER and convocation; co-investigators and staff on grant proposals and funded projects; co-authors of published works
    • CaReNet, Colorado Research Network; COCONet, Colorado Children's Outcomes Network; ECER, Engaging Communities in Education and Research; HPRN, High Plains Research Network; NAB, Network Advisory Board; NAPCRG, North American Primary Care Research Group; PAC, Patient Advisory Council; PACE, Patients and Clinician Engagement; PBRN, Practice-based Research Network; SNOCAP, State Networks of Colorado Ambulatory Practices and Partners; CAC, Community Advisory Council.

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    Table 3.

    List of Past Topics by SNOCAP PBRN

    PBRN Advisory GroupProjects
    HPRN CACColorectal Cancer Screening
    Asthma
    High blood pressure home monitoring
    PCMH
    High risk assessments
    Methamphetamine
    Hypertension
    Behavioral Health
    Mental Health
    Preventing mental, emotional, and behavioral issues in youth
    Chronic Obstructive Pulmonary Disease
    Medication Assisted Treatment for Opioid Use Disorder
    SBIRT
    CaReNet PACDiabetes
    Improvement in physical activity and healthy eating
    Tobacco Cessation Counseling
    Patient Safety
    Chronic Pain
    Dementia/Alzheimer's
    COCONet NABTraining care advocates, to improve health outcomes
    Mental Health care access
    Immunization refusal
    PEACHnet RABIntersection of diabetes, obesity, and mental health
    Food insecurity
    • CAC, Community Advisory Council; CaReNet, Colorado Research Network; COCONet, Colorado Children's Outcomes Network; HPRN, High Plains Research Network; NAB, Network Advisory Board; PAC, Patient Advisory Council; PBRN, Practice-based research network; PCMH, Patient-Centered Medical Home; PEACHnet, Partners Engaged in Achieving Change in Health; RAB, Regional Advisory Board; SBIRT, Screening, Brief Intervention, Referral to Treatment.

    • Convocation: this is a small state-wide conference of PBRN and CTSA Engagement core stakeholders held bi-annually in the Denver area.

    • ECER: Engaging Communities in Education and Research—this is a state-wide conference of health professionals, rural preceptors, PBRN members, and community/patient partners held bi-annually in Colorado.16

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The Journal of the American Board of Family     Medicine: 32 (5)
The Journal of the American Board of Family Medicine
Vol. 32, Issue 5
September-October 2019
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Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks
Mary Fisher, Sarah E. Brewer, John M. Westfall, Matthew Simpson, Linda Zittleman, Sean T. O'Leary, Douglas H. Fernald, Andrea Nederveld, Donald E. Nease
The Journal of the American Board of Family Medicine Sep 2019, 32 (5) 663-673; DOI: 10.3122/jabfm.2019.05.190038

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Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks
Mary Fisher, Sarah E. Brewer, John M. Westfall, Matthew Simpson, Linda Zittleman, Sean T. O'Leary, Douglas H. Fernald, Andrea Nederveld, Donald E. Nease
The Journal of the American Board of Family Medicine Sep 2019, 32 (5) 663-673; DOI: 10.3122/jabfm.2019.05.190038
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