What Institutional Barriers Might Research Teams Face?

Research institutions—organizations that conduct research—may have policies, systems, and norms that do not support stakeholder participation as full research partners including:

• Leadership that doesn’t understand—or value—patient-centered outcomes research (PCOR) or stakeholder involvement.
• Policies that limit access to facilities for non-employees or charge fees for facility use.
• Communications or information technology (IT) that is restricted to institutional staff.
• Accounting systems that do not compensate non-employee partners.
• Budgeting rules that may not include compensating stakeholders for their time and expertise.
• Institutional Review Boards (IRBs) that are unfamiliar with multi-stakeholder teams and the concept of stakeholder partnership, or that require stakeholders to complete certification in research ethics.

How Can Research Teams Address Institutional Barriers to Stakeholder Engagement?

Research teams can:

• Identify and work with PCOR champions in the institution to advocate for institutional changes that support stakeholder engagement.
• Educate senior leadership about the value of patient-centered, stakeholder-driven research and demonstrate how the institution could support it.
• Communicate and build partnerships with key departments such as IT, accounting, IRB, and human resources (HR) to identify and adapt systems to support stakeholder involvement.

Stakeholders and researchers may face challenges engaging with each other in research.

What Kind of Challenges Might Stakeholders Face?

• Logistical challenges, such as:
  • Limited time to attend meetings or other study-related activities due to work, childcare, or other commitments.
  • Health problems or physical limitations caused by the condition being studied for the stakeholder or the person they are caring for.
  • Limited access to meeting locations due to limited transportation options.
• Limited finances to pay for transportation to meetings and other study events, internet access, parking, or childcare.
• Limited fluency in English.
• Lack of familiarity with research concepts or terms.
• Concerns over confidentiality or privacy such as how their individual healthcare experiences will be protected.
• Overwhelming demands from institutions such as institutional training or certification.

What Kind of Challenges Might Researchers Face?

Even researchers who have experience partnering with stakeholders may face challenges such as:

• Identifying stakeholders who have relevant experience and are a good fit with the team.
• Limited time to build and sustain stakeholder relationships.
• Unanticipated costs related to supporting stakeholder involvement.
• Communicating study information in a way that allows stakeholders to make meaningful contributions.
• Balancing scientific rigor while being responsive to input and feedback from stakeholders.
• Sharing authority with stakeholders who lack the credentials and experience of an academic or medical professional.
• Being open and honest when discussing intentions, interests, and needs with stakeholders.
• Keeping an open mind and recognizing that different perspectives may be helpful, for example, by offering insight into the study population to help with recruitment.

How Can Research Teams Anticipate or Solve Challenges and Barriers to Engagement?

• Ask team members what they need to successfully participate in team meetings and activities (for example information, support, or technology).
• Plan meetings to make sure they are convenient for all or most team members, prioritizing stakeholder needs. Consider which meetings may not be necessary, which could be held in a more convenient location, and which could be held virtually.
• Anticipate and plan for stakeholder costs to fully participate as part of the team, such as transportation and parking.
• Develop creative solutions to barriers and challenges as a team, such as seeking resources through partnerships with stakeholder organizations and local government.
• Set, communicate, and revisit clear goals at study outset and throughout the study (for example, through meeting agendas and summaries).
• Provide ongoing training and support for stakeholders in research methods, such as plain language materials and glossaries of research terms.
• Build support from within, training researchers, team members, and other staff about the value of working with stakeholder partners.
• Commit to stakeholder engagement principles from the start, and revisit them often.
• Identify and plan for barriers and challenges from the earliest stages of planning.
• Identify a liaison on the research team to coordinate communication between team members.