Better consultations through involving patients in research

Catherine Hyde

Your work focuses on shared decision making with patients, what is it that motivates you to work in this area?

I became interested in sharing decisions around prescribing as a GP registrar. Several patients came to review appointments and, often rather guiltily, told me about the many reasons why they hadn't taken the blood pressure, anti-depressant or pain relief medication prescribed in a previous consultation. I have continued to research, teach and focus on the rather neglected 'second half' of the consultation (Elwyn, 1999).

As the focus of medicine and general practice has shifted more to caring for long-term conditions, managing complexity and helping patients self-manage their conditions, there is recognition of the need to think differently about management in consultations (Fischer, 2012). Sharing decisions is, I think, part of this. Sharing decisions is not practical with every condition and patient, but pain relief is a situation where it can clearly apply. When someone wakes up at 03:00 with back pain, I will not be there, so they need and want to be able to manage that pain themselves.

What roles can patients play and why is this important?

Research in General Practice is expanding, with specific funding for research which aims to contribute to improve care delivered in everyday practice. Whilst the questions that researchers want to answer are important, as are questions from GPs who consult with patients day in, day out, patients can also contribute to research. Patients can be involved at different levels from setting research priorities (Strass, 2012) to commenting on questionnaires and information leaflets (Stanley, 2009). Considering whether and how patients are involved is becoming a marker of good research.

Any patient from any practice can become involved in research either through national organisations such as INVOLVE, or through University-based groups, such as the Research User Group in the Institute for Primary Care and Health Sciences at Keele University, which I worked with.

How did you involve patients with your work?

I worked with 5 to 6 patients from the Keele Research User Group, which is an established patient group of participants who were recruited to contribute to research within the Institute, and who all have musculoskeletal pain. My aim was to include the patient perspective in a systematic review with narrative synthesis: exploring factors affecting shared decision making in prescribing pain relief for musculoskeletal pain in primary care consultations.

Through 3 workshops we discussed:

  • the relevance of the research question
  • how the group would be involved in the study
  • the patients' perspective on factors that affect shared decision-making in prescribing for musculoskeletal (MSK) pain in primary care
  • the groups views on initial results of the review and the limitations of the literature
  • how their views had impacted on the review
  • how to share the results of the study
  • how the review linked with the next stage of the research (analysing digitally recorded video consultations to explore shared decision-making in prescribing for MSK pain).

After the initial workshop, I searched articles identified in the systematic review of published literature for factors affecting shared decision-making, including the factors that the patients felt were important. At the second workshop, I discussed the provisional results of the review with the patients and integrated this views in the final synthesis. At the final workshop I presented the final results of the study and the impact of the group's involvement on the review and we discussed the process of the next stage of the research.

How did the involvement of patients impact the research activity?

The group strengthened the relevance of the research topic and question. They felt GP consultations can have an important impact on their pain control and general well being. They expressed hope that decision-making could be more openly shared in the General Practice setting, particularly with prescribing for pain relief.

Patients identified factors of importance to them in sharing the decision of being prescribed pain relief for musculoskeletal pain which were similar to those highlighted by the study team, but they also identified additional factors that were not represented in the literature, such as emotion in the consultation. The patients provided a useful perspective on the applicability of the review to patients' experience in UK primary care, which I have integrated in the review. Several group members were involved in presentations of the review at conferences, and we have agreed plans to share the results of the review with different audiences in future presentations and written materials (including a paper for peer-reviewed journal).

What surprised you most about the working patients in research?

It was fascinating to have a more equal relationship with participants, so they could clearly express their views about sharing decisions in general practice, including the emotional aspects of living with pain and discussing dissatisfactions with consultations.

I was surprised at how much the patients in the group reported actively managing their consultation, taking subtle clues from the doctor. They expressed concerns similar to GPs such as the lack of time in the consultation and potential risks of taking medication.

What was the impact of involving patients in research on your consultations?

As a GP, working with the PPI group in my study has changed how I manage the discussion of pain relief medication, discussing the real detail of how medication can be used flexibly. When patients raise concerns about taking medications, I also try to delve a little more deeply into the exact reasons. My aim is to avoid making too many assumptions about what the patient thinks: what the patient group described as 'mind reading'.

Acknowledgements

The PPI in this study was funded by the Scientific Foundation Board of the Royal College of General Practitioners (Grant number SFB 2014-01).

The systematic review is independent research arising from an In-Practice Fellowship for Catherine Hyde supported by the National Institute for Health Research or the Department of Health.

To find out more about opportunities for research funding from the Royal College of General Practitioners click here.

Catherine Hyde will have a poster on display at the RCGP 2014 annual conference.

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