Using Patient Voices to Conduct Patient-Centered Research

As clinicians, we use evidence-based medicine to drive our medical decision making. Evidence-based research focuses on evaluation of clinical research and then applies the best available evidence to medical practice. ¹ Evidence-based medicine is useful when focusing on patient outcomes such as treatment response, graft failure, and rejections; however, it cannot answer all research questions posed by investigators especially when attempting to describe the lived experiences of patients’ illness or healthcare providers’ lived experiences when treating patients. Evaluation of medical outcomes quantitatively through a positivist epistemological lens places an emphasis on treating patients as a diagnosis or as an object to treat. Instead, an anti-positivism, post-modern epistemological approach to medical research using qualitative research methods can be used to add meaning to patients’ experiences dealing with the healthcare system. These voices can add meaning to what it is like to live with end-stage organ failure, receive an organ for transplant, donate an organ to a loved one or stranger through living donation, or the experiences of a surviving organ donor family member. Acknowledging these multiple voices reduces the power relationships between healthcare providers and patients. Human emotions such as empathy and compassion should be entwined with any medical treatment and practice, and healthcare providers should listen to patients’ and their family members’ needs rather than the healthcare providers’ definition of need.

There are several ways to include patient voices into our research. The most obvious way is to use qualitative research methods to collect insights in the experiences, perceptions, and behaviors of patients suffering from acute or chronic disease. Qualitative research methods such as eliciting stories, conducting focus group interviews or individual interviews, making observations, or using photovoice can inform researchers of patients’ perspectives about their illness and coping strategies. Patients have first-hand knowledge of their illness and how their illness impacts their daily lives. They are also aware of their top priorities to their medical management. This information is even more important as healthcare systems look at patient satisfaction as a gauge of healthcare quality. Qualitative research is not limited to patients alone but can be used to identify physicians’ perspectives regarding their diagnosis and treatment of illness. ² Understanding these experiences allows investigators to gain a sociocultural understanding of health from the perspective of the patient and/or healthcare provider and opens the opportunity to reflect on the importance of caring and attending to patients’ needs.

Another strategy to include patient voices in research is patient-centered outcomes research (PCOR), which involves a collaboration between healthcare stakeholders and patients in the research process. ³ The Patient-Centered Outcomes Research Institute stated, “PCOR helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options.” ³ PCOR encourages patients’ involvement and feedback throughout the entire research processes, which may include the research design, data collection, and dissemination of results phases of research. ⁴ Patients may contribute to the research process by providing input through ad hoc work groups, advisory committees, or as co-investigators. ⁵ Two recent articles effectively described how involving patient feedback improved/informed their research design, interventions, and implementation from a patient perspective. Perito et al ⁴ described a PCOR program among a learning health system dedicated to pediatric liver transplants and a parent-led advocacy group. Their research goal was to educate providers and patient families about PCOR and develop additional ideas for PCOR in pediatric liver transplants. Lieber et al ⁶ described the implementation of a PCOR patient advisory panel composed of six adult liver recipients. Participants attended five, 2-h virtual sessions where they were asked to identify clinical liver transplant research barriers and evaluate research materials. The researchers stated the patient advisory panel was useful in identifying key knowledge gaps as well as receive patient perspectives on interventions of future research. This type of research may encourage and enhance patient motivation to become involved with medical research.

Not all research questions are based on a null hypothesis supported by quantitative data and statistical methods. While wanting to use evidence-based medicine to provide the most safe, effective, and efficient treatment to our patients, medical providers should also be informed by their patients’ lived experiences and prospectives while remembering there is a human side to medical practice. Patients all have a unique history and lived experiences shaping their perspectives of their medical care. Emphasizing their voices can enhance and inform medical practice and future research.