Research as an event: a novel approach to promote patient-focused drug development

Figures & data

Table 1 The six steps: an implementation guide for research as an event

Six steps	Six-step guideline	Actions	Lessons learned
Determine research partnership	Determining the research partnership allows the organizational partner and the researchers to connect and establish contact. It is initiated by an organization in the disease community or by a research team interested in engaging patients in research	The FPWR reached out to researchers at Johns Hopkins seeking its expertise in patient’s preference and its experience in collaborating with patient groups to support the patient-focused drug development	Research partnership does not have to be initiated by research organizations. Patient advocacy groups interested in research can actively seek out research organization to collaborate on research questions relevant to the disease community
Assess communication channels	Research as an event works best when prior engagement within the disease community exists. The organizational partner or researchers locate and assess the prior engagement patterns and communication channels for later outreach	The FPWR is deeply connected with the PWS community. The FPWR has reached the PWS families in the community in the past with an e-mail registry list and regular community-centered events	Patient advocacy organizations with strong ties to the community with established engagement channels and prior engagement history can facilitate the communication and provide credibility to the research
Identify compatible event	Once the researchers and the community connect and define a common goal, the researchers will select a suitable event based on input from the community. The event is usually preplanned and not conducted only to satisfy the aim for research	The FPWR identified the FPWR annual family conference as the ideal venue for research as an event. FPWR organized the family conference to provide social support to the families and facilitate research. Resources for recruitment, supporting staff, and venue have been allocated to the event	Patient groups often organize regular community-centered meetings to engage the patients and families and to advance research, which aligns with the purpose of research as an event. Resources that can be used to facilitate research activities often overlap with the resources that are used to conduct the event
Plan according to event	The research activities should be planned according to the flexibility of the event and the convenience of the participants. The researchers can reach the potential study participants through preidentified communication channels in step 2	The research team met with conference staff to understand the event structure and plan the best way to reach the participants, such as including the survey in the registration package to disseminate efficiently. Information about the study was sent out through preconference announcements through FPWR’s network	Conference staff can be a good resource for the researchers to tailor the research activities to the event and increase the access of the patients to the researchers. Resource input is not needed to establish new communication channels when prior communication patterns exist
Engage through presence	The researchers should be on-site, reachable, and ready to engage at the time of the event. Multiple communication channels or additional assistance (such as an interpreter) may be used to facilitate the encounter and further the engagement	An information booth was set up in front of the main exit of the conference room. At least one researcher was present at the information booth at all times during the conference to interact with participants. Researches engaged the conference participants through in-depth interviews and pilot survey	Researchers on-site allow the participants to engage them face to face. It also offers the participants an opportunity to communicate with the researchers and learn more about the study. Study participants provided positive feedback about the engagement process
Give and receive feedback	Feedback on the research activities and the facilitation of the community should be communicated. A well-organized research as an event should achieve the goal agreed by the community and researchers while optimizing the available resource	Participants offered positive feedback about research as an event through the postsurvey debrief interviews. The research team and the patient organization had an informal feedback session to discuss the results and implications of the research as an event	Research as an event is regarded favorably by the participants as a feasible method to engage patients and other stakeholders in research. It is also a way for patient advocacy groups to bring in researchers to achieve a common research objective

Abbreviations: FPWR, Foundation for Prader-Willi Research; PWS, Prader-Willi syndrome.