As a general respiratory physician, schooled in the clinical world of evidence-based medicine (EBM), I shared a common view that qualitative research was, well, flaky. Where was the science? The statistical significance? How could I apply this to my clinical work?

Then, as part of a clinical research project looking at the potential benefits for people with chronic obstructive pulmonary disease (COPD) of participation in a community-based singing group, I conducted a mixed-methods quantitative/qualitative study. [1] This is what I learned.

I was fortunate to have an experienced qualitative researcher to show me the way and help me to understand the bewildering world of qualitative methodology. Through 12 one-to-one interviews and a focus group discussion, we explored how participating in a community singing group contributed to the health and wellbeing of people living with COPD. [1] The interviews and focus group were recorded and transcribed, so I then got to use some qualitative research software—QDA miner lite—to manage the data coding of the emerging concepts, themes, and ideas. [2]

But the most important and life-changing thing for me was the privileged insight into the lives of 23 people living with COPD. In contrast to my standard clinical consultation, typified by specific, closed questions such as “how far can you walk?” and “do you have a productive cough?’”, we used open-ended questions such as “what was it like for you?”, “how did being in the group make you feel?” and “how was this different from other community support groups?”

I learned about shame, guilt, sadness, fear, and loneliness. 

An unexpected common theme was how much people appreciated “being cared for,” besides more well-recognised human influences such as connectedness, purpose, growth and participation in a meaningful activity. 

In quantitative research, the feelings of COPD patients are generally measured by symptom scores such as the Hospital Anxiety and Depression Score (HADS), St Georges Respiratory Questionnaire (SGRQ) and Clinical COPD Questionnaire (CCQ). Using these scores in the quantitative part of our project, I was surprised by how prevalent low levels of literacy were in our cohort—making a mockery of the validity of their scores. This reductionism of humans’ complexity can never adequately represent their health, beliefs, vulnerabilities, goals and desires. 

Using the term “patient coproduction”, Paul Batalden explains how his thinking about health over a decade has transformed from a series of transactions informed by EBM — a “what can we do for you?” approach — to a more service-oriented idea of health, placing any transaction in the context of the aim of the person/patient and the relationship between that person and the health practitioner, so that the question becomes, “what matters most to you?” [3] Rana Awdish, in her book In Shock , advocates in a compelling way this fully person-centred approach to every contact healthcare professionals have with patients. [4]

Having absorbed with humility—and no little embarrassment—some of the lessons from our COPD singing group participants, the COPD literature, which is full of learned advice about how we should educate patients and change behaviour, sounds paternalistic, arrogant and medicalised. No wonder the interventions don’t work. 

Increasing patient involvement in research topics (such as the James Lind Alliance), trial design and guidelines is welcome, but it needs to be more than a token individual or two. [5]  We need to know the aims, hopes and fears of the individual patient beside us every step of the way. This is neither the views of a small group analysed intensely using qualitative methodology, nor a spoonful of a symptom-score soup from quantitative research.  

A simple, valid tool for patients to express their “lived experience” would be welcome. The voices of people living with COPD need to be heard, and healthcare providers really need to listen.

Amanda McNaughton, Respiratory Physician Nottingham

Twitter: @AmandaNHSRespDr

Competing interests: none declared

References: 

1. McNaughton A, Aldington S, Williams G, et al. Sing Your Lungs Out: a qualitative study of a community singing group for people with chronic obstructive pulmonary disease (COPD). BMJ Open2016;6: e012521. DOI: 10.1136/bmjopen-2016-012521
2. QDAMiner Lite: https://provalisresearch.com/products/qualitative-data-analysis-software/
3. Getting more health from healthcare: quality improvement must acknowledge patient coproduction—an essay by Paul Batalden. BMJ 2018;362: k3617
4. In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope. Dr Rana Awdish New York: St. Martin’s Press, 2017. ©2018
5. James Lind Alliance: http://www.jla.nihr.ac.uk/