A growing need for patient voices in research

My personal research agenda is about helping pregnant women to make decisions based on the best available evidence about their options for pregnancy and childbirth. It is also about giving women the opportunity to communicate what is important to them in making decisions about birth.  I am currently immersed in a new research project in the United States (US) with the aim of supporting women in shared decision making about birth after caesarean, using an interactive decision-aid. The first phase of this project involves listening to the voices of pregnant women in New Haven, Connecticut, as we adapt and translate my Australian-made decision-aid to meet the needs of American women (Funded by NIH/AHRQ (1R21HS022114-01 http://nursing.yale.edu/using-interactive-health-it-support-womens-choices-birth-after-cesarean). The women of New Haven are quite a diverse group and very different to women I have worked with previously in Australia. I have enjoyed my discussions with them immensely.  The purpose of our conversations has been to seek their advice and to ask them to share what is important to them about birth after caesarean. We have asked them to contribute to the design of our new interactive health information technology (IT) decision-aid in the hope that it will truly support US women as they make birth choices in the future.

This project had led me to think a lot about the need for patients to have a voice, not only in choices about their healthcare but in the process of gathering evidence through research. As I have been conducting these interviews over the last few months, one of the most striking things I have noticed is that the women I have interviewed don’t often have a voice in healthcare development. They have been eager to help other women, and even though they may not get to experience the new decision-aid themselves, they are keen to make a contribution to better healthcare for women. They have so generously shared their ideas and experiences with me about the things that matter most to them as they make birth decisions and hope that this will help other pregnant women have more positive experiences in the future. Working with women in this way has not only provided rich data but I feel more confident that this new decision-aid we develop will be more likely to meet the needs of this different group of women than if we had developed it in isolation, merely using evidence from previous research.

The movement away from paternalistic medicine towards patient-centered healthcare is not only opening up new avenues for patients to have a voice in their personal healthcare but also in the gathering of evidence that underpins their care. Patient voices are increasingly sought in setting priorities for research and in research design.  Asking research questions that are meaningful to patients has become an important prerequisite for funding bodies like the Patient Centered Outcomes Research Institute (PCORI) in the United States. Rather than researchers working in isolation making decisions about the most pressing research problems, there is a growing expectation that researchers will have patients join their research teams and provide input into the process used, outcomes being examined, models of care being designed and strategies for effective translation into practice. The mission statement for PCORI communicates a clear message to researchers that in the future “…evidence-based information must come from research guided by patients, caregivers and the broader health care community”. (http://www.pcori.org/about-us/mission-and-vision/).

Involving patients in the development side of research presents a challenge for researchers who have traditionally expected patients to provide passive rather than active voices as they participate in research. It is particularly a challenge for those who think they have a good handle on the evidence and believe that they know what is best for patients. Having patients as part of the research team will involve the development of new strategies in community engagement and in educating patients about how their voice can be most effective when working with research teams. The fact that it is valuable does not mean that it is easy. My personal experience in seeking input from patients has been that it is time consuming and very much about working with patients on their terms and in working around their sometimes chaotic personal lives and schedules. But it has been truly worth the effort and I thank the women for their generosity!

Allison Shorten RN RM PhD

Yale University School of Nursing


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