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Table 4 Stakeholder consultation, involvement, partnership, and shared leadership in clinical research

From: Engaging people who use drugs in clinical research: integrating facilitated telemedicine for HCV into substance use treatment

Levels of engagement

Stakeholders

Patient Advisory Committee (Clinical research participants)

Opioid Treatment Program (Patients, leadership, administrators, staff)

Research Team (Academic institutions, research staff, case managers, patients, steering committee)

New York State Government (OASAS, NYS DOH)

Patient Care

• PAC ensures that the patients’ voice is represented throughout entire research process.

• OTP staff value the positive health outcomes and endorse the study to their patients.

• Patients support a peer pipeline endorsing HCV treatment to other patients.

• CMs promote trust, integrate into the OTP staff, address competing priorities, and facilitate telemedicine encounters.

• Patient feedback on procedures is invaluable to the research team.

• OASAS encourages patient-centered care.

Organizational design

• PAC comments on privacy and confidentiality issues.

• PAC recommended HCV education for patients.

• Patients disseminate information via peer pipeline.

• OTP staff participates in HCV education via learning lunches.

• OTP staff provides feedback to research team.

• OTP staff integrates HCV care into OTP workflows.

• Team leadership aims to understand the culture and community of each OTP.

• Team leadership incorporates OTP values into the study objectives.

• OASAS facilitates OTP engagement by connecting study and OTP leadership.

• OASAS approves HCV care in study OTPs.

Policy

• PAC disseminates study outcomes.

• OTP leadership aims to sustain onsite HCV care.

• Team leadership disseminates the study outcomes to OASAS, NYS DOH, and beyond.

• OASAS recommends HCV testing and treatment in all OTPs.

• DOH funds telemedicine for mental health, substance use, and HCV.

  1. Additional study stakeholders include specialty pharmacies, pharmaceutical and diagnostic companies and videoconferencing companies. They were responsible for establishing protocols in their respective areas. They also advised on deployment of telemedicine for HCV outside of New York State as well as telemedicine expansion for other health conditions
  2. CM case manager, HCV hepatitis C virus, NYS DOH New York State Department of Health, OASAS Office of Addiction Services and Supports, OTP opioid treatment program, PAC patient advisory committee
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Research Involvement and Engagement

ISSN: 2056-7529

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