September 16, 2016: PCORnet Building Trustworthiness

September 16, 2016: PCORnet Building Trustworthiness


PCORnet Building Trustworthiness


Sharon Terry, MA, President and CEO of Genetic Alliance

Jennie David, BA, Clinical Psychology Doctoral Student at Drexel University and Former Patient Advisory Co-chair of the ImproveCareNow Network

Annesa Flentje, PhD, Assistant Professor at the University of California, San Francisco

Neely Williams, MDiv, Administrator of the Community Partners Network


Patient centricity; Stakeholder engagement; PCORI; PCORnet; Trustworthiness; Patient engagement; Research ethics; Research dissemination

Key Points

  • To achieve trust in clinical research, we must first be trustworthy. Key principles of trustworthy engagement include:
    - Striving for equity among stakeholders
    - Considering the social determinants of health
    - Being participant-driven and creating a co-learning environment
    - Being sensitive to how individuals understand and experience health and disease, access to healthcare, and participation in research
  • Engaging patients early and with intention is essential, including involving them more deeply in the work of institutional review boards (IRBs).
  • How research is reported is also important and involves understanding and explaining sources of disparities. Participant engagement and dissemination activities need to be planned for and supported throughout the whole research process.

Discussion Themes

A critical factor in building trustworthiness is the ability to embrace cultural humility—an honest process of self-reflection that examines patterns of unintentional bias and discrimination.

“Patient” is a role (a thing I do) rather than an identity (the thing I am). This distinction is important. Another term might be “expert by experience,” whereby someone may gain expertise in a patient role and then provide that expertise in a research collaborator role.

Disseminating research results is essential but challenging, given the often lengthy lag time between data collection and availability of results.

For More Information

Visit the PCORnet Building Trustworthiness website:

Watch recorded webcast sessions from the Building Trustworthiness in PCORnet workshop held March 28-29, 2016.

Launching Fall 2016: The PCORnet Commons for knowledge sharing and collaboration across clinical research.

#BuildingTrust, #PCORnet, #pctGR
@SharonFTerry, @PCTGrandRounds, @Collaboratory1, @PCORnetwork