Patient Voice Is Key to Advance Oncology Nursing Research

Adding patient engagement strategies can help to enhance the research agenda for oncology nursing.

Approximately 4.8% of the US population is comprised of cancer survivors (15.5 million people)—a number that is expected to jump to 20.3 million by 2026. While this number continues to grow, as does the amount of people experiencing long-term and late effects from their cancer treatment.

“Current survivorship care accreditation requirements are based on expert opinion because strong evidence is lacking,” said Lanell M. Bellury, PhD, RN, AOCNS, OCN, associate professor,

Georgia Baptist College of Nursing of Mercer University in Atlanta. “The cancer survivors' perspective is rarely reflected in survivorship research.”

Therefore, the researchers created a project aimed to outline patient engagement strategies used in patient-centered outcomes research to determine its potential impact on advancing research agendas within oncology nursing.

“Patient-centered research, including patient engagement through the research process, has been proposed as a means to more effectively build relevant evidence for patient care,” added Bellury.

In the project, Cancer Survivorship Care in Georgia Partnership Members: A Patient Engagement Example, the researchers aimed to:

• connect with stakeholders interested in the needs of vulnerable cancer survivors;
• explore current survivor needs, care programs, and indicators of care quality;
• communicate effectively with partners and stakeholders; and
• develop a fundable comparative effectiveness research question.

Through the project, presented at the Oncology Nursing Society (ONS) 43rd Annual Meeting, a partnership—including cancer survivors, caregivers, oncology nurses and nurse navigators, oncology providers, cancer program administrators, and researchers—was created to identify research strategies to address patient-centered research questions. In turn, the partnership used focus groups, surveys, educational presentations, and networking meetings to develop priorities revolving around patient-centered research initiatives.

“We as oncology nurses have historically been interested in patient advocacy,” Bellury said. “We’ve listened; we’ve heard our patients. There is this focus on patient-centered care, so we are all about the patient voice. But patient engagement in research actually has different implications.”

In this presentation, the researchers focused on how they could incorporate patient engagement into the 2014-2018 ONS Research Agenda, in which priority topics included symptoms; late effects of cancer treatment and survivorship care; palliative and end-of-life care; self-management; aging; family and caregivers; improving healthcare systems; risk reduction; and cross-cutting themes (bioinformatics, biomarkers, CER, dissemination, and implementation science).

In 2015, 28 stakeholders were invited to the first partnership meeting for this project. Following that, 15 have persisted.

“(In that time), patient-centered outcomes of interest have included health-related quality of life, symptom management, fear of recurrence, social support, and return to meaningful work,” Bellury said.

But, can patient engagement answer these questions? Bellury is unsure, but hopeful. “I think there are a few things we can think about,” she said. “If we just include patients as stakeholders in these (research) agendas, that may go a long way in helping us to hear the voice of cancer survivors in our research endeavors.”

In addition, she noted that these endeavors will take time (about 2 years to set the research agenda), and that it is helpful to be as explicit as possible.

We have spent years trying to break down the interprofessional silos of research agendas and what we are doing,” Bellury said. “Perhaps we might think of patient engagement as a different kind of silo we need to break through so that it may actually be the next generation of having meaningful research and answers questions that are very important.”

Reference

Bellury L, Patterson A. Can Patient Engagement Advance the Oncology Nursing Research Agenda? Presented at: ONS 43rd Annual Congress; May 17-20, 2018; Washington D.C. https://ons.confex.com/ons/2018/meetingapp.cgi/Paper/3398