Patient Care Access News

Partnering with Advocates for Patient Engagement in Research

Medical professionals have identified research as an event as a key strategy for incorporating patient engagement in healthcare research.

patient engagement in research

Source: Thinkstock

By Sara Heath

- Drug developers and medical groups can improve patient engagement in research by conducting research as an event programs, according to a paper published in Dove Medical Press.

Research as an event allows medical researchers and drug developers to access a patient panel who could help inform research around a healthcare treatment or strategy, said the researchers from Johns Hopkins Bloomberg School of Public Health.

“Research as an event allows patient groups to partner with researchers and use a community-centered event to engage patients and other stakeholders in their own environment with little additional cost for the researchers to plan and execute the event,” the team said. “The event is planned not for the purpose of research; rather, the research accommodates the cause and the format of the event.”

The strategy involves six core steps, including:

  • Determine research partnership
  • Assess communication channels
  • Identify compatible event
  • Plan according to event
  • Engage through presence
  • Give and receive feedback

These steps aim to ensure researchers leverage the best-fit patient market, have a beneficial relationship with event leaders, and use their resources judiciously.

These steps work to increase the likelihood that researchers will garner patient engagement in their investigational efforts. Currently, healthcare researchers and drug developers face calls to involve patients in their research.

The 21st Century Cures Act has emphasized the importance of patient experience and preferences during regulatory review. Patient-focused drug development, commissioned under the Prescription Drug User Fee Act V (PDUFA V), has made it clear that drug developers must take into account patient issues when creating new treatments.

However, medical professionals currently face a litany of challenges when incorporating the patient into the research process.

“The additional time and funding required for patient engagement are challenges that are present in the current practices,” the research team said. “Other barriers include the procedural requirements for training, transportation, and attendance, which may lead to patient frustration over the prolonged process of participation. Other fundamental problems exist, such as where and how to recruit patients and other stakeholders to participate.”

The researchers have successfully deployed research as an event while investigating treatments for Prader-Willi Syndrome. In partnership with the Foundation for Prader-Willi Syndrome (FPWS), the researchers were able to target a specific and engaged patient population to inform their research.

“Participants were motivated beyond compensation and expressed interest in participating in future studies,” the Johns Hopkins researchers reported. “They openly stated that they would prefer to engage with on-site researchers compared to answering an online survey, which is consistent with evidence supporting a personal approach in recruitment.”

Despite the promise of research as an event, the Johns Hopkins team still has its apprehensions. The practice has not yet picked up steam, and there are some challenges that lay ahead before research as an event can be recognized as a bona fide research strategy.

“Currently, there is no formal evaluation process to examine the execution and results of research as an event,” the team acknowledged. “A committee consisting of patients, caregivers, clinicians, and research as event researchers should identify performance measures and develop standards relating to cost, enrollment rate, survey completion rate, and participant satisfaction metrics. This measurement framework can be applied to standardize research as an event and provide improvements to the six-step guideline.”

Researchers may also face their own individual challenges when testing research as an event. For example, some disease communities have limited governing bodies and patient advocate programs, meaning there may be limited prior patient engagement patterns. In these cases, researchers themselves will need to be organizations and establish strong communication among stakeholders.

Conversely, some disease communities have rigid governing bodies that have their own logistical and bureaucratic challenges associated with research as an event.

“Researchers may then have to go through a tedious process to acquire the complete buy-in of the community or they may encounter push back when attempting to install research as an event to a meticulously planned conference,” the research team recommended.

Incorporating patients into medical research is a key component of the healthcare’s journey to more patient-centered care. Healthcare researchers must ensure their research question is pertinent to patients, patients help design the study, and patients can easily access the study’s results. This will  make emerging medical insights more applicable to patients.


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