Rising to the Challenge of Patient Reported Outcomes

June 9th, 2016 in Hot Topics

Sally Thorne

Author: Sally Thorne, RN, PhD, FAAN, FCAHS 

Affiliations: University of British Columbia School of Nursing

Cancer nurses have a strong commitment to the idea of documenting, interpreting and making use of that which patients report about their own cancer experiences and outcomes. As a consequence, many have taken up qualitative methods in an attempt to shed light on what it is for patients to live with diagnosis, treatment, and survivorship, to engage with cancer care systems, and to wrestle with the social and psychological implications of this disease. Historically, nurses drew directly upon social science methods (such as phenomenology, grounded theory, ethnography) for such work, but increasingly came to realise that such methods were designed more toward building theory than generating the kinds of useful knowledge that nurses need to inform practice.

Over the past three decades, I have been involved with figuring out how the great technique that was invented for social theorizing can be extracted, adapted and reworked to better match the real questions that nurses need to ask. For example, rather than assuming there is a singular dominant experience in any context, nurses will always expect important human variation. In fact, alerting the clinical imagination toward the detection and interpretation of that variation is a fundamental attribute of expert clinical practice. So our research approaches have to be applied rather than just theoretical in order for the knowledge we produce to shape the disciplinary need.

In the early days of qualitative research in nursing, we assumed that neophyte researchers (such as clinicians and graduate students) were best served by following a methodological rulebook. Now we understand that the core foundational ideas of nursing provide a great deal of direction for the “detective work” that constitutes a great qualitative study. We are freeing up nurse researchers to position their disciplinary knowledge needs and professional audiences front and centre in their thinking as they work through study design. Using nursing logic, they can build an accessible and credible line of reasoning from their research question through to its answer. An example from our previous work is a study of patient perceptions of poor communication, considered from the perspective of what we in the care system might actually do to prevent it.[1]

I have been honoured to be part of this ‘movement’ in emancipating qualitative methodology so that it becomes an accessible resource and tool in the hands of thoughtful practicing nurses, and not the exclusive privilege of those with elite academic training. Every day I encounter amazing nurses generating powerful insights with application at the point of care, challenging the status quo assumptions of our care systems on the basis of experiential knowledge they glean from the cancer patients they study, and filling in the gaps in our understanding that population-based (quantitative) evidence leaves behind. In the newly published second edition of my methods text[i], I am demonstrating how nurses build knowledge translation right into their designs, rather than considering it an afterthought. This is not something I ‘invented;’ rather, it is an approach to knowledge generation that I have observed throughout my career as the classic inquiry style of great nurse thinkers. And there are so many from whom to learn!

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[1] Thorne, S., Oliffe, J.L., Stajduhar, K. I., Oglov, V., Kim-Sing, C., Hislop, T.G. (2013). Poor communication in cancer care. Cancer Nursing, 36(6), 445-453

[i] Thorne, S. (2016). Interpretive description: Qualitative research for applied practice. New York & London: Routledge.