Patients' and clinicians' involvement in a systematic review: a Norwegian experience

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (1)

Date: 

Sunday 16 September 2018 - 11:40 to 12:00

Location: 

Ochil 1

All authors in correct order:

Tinderholt Myrhaug H1, Hansen T2
1 The Norwegian Institute of Public Health, Norway
2 The Norwegian Blood Cancer Association, Norway
Presenting author and contact person

Presenting author:

Hilde Myrhaug

Contact person:

Hilde Myrhaug
Abstract text
Background:
The Regional Knowledge Translation Centre in Oslo commissioned a group of patient representatives, clinicians and researchers (N = 9) to conduct a systematic review on the effects of cancer rehabilitation.

Objectives:
To involve patient representatives, clinicians and researchers in the development of a systematic review about the effects of multidisciplinary psychosocial interventions in cancer patients and to prioritise the need for further research.

Methods:
We gave four workshops over 18 months to support patients, clinicians and researchers. At the first workshop, the topic was general information on how to write a systematic review, pose a research question and set selection criteria. We reached consensus by discussions on email. The second workshop focused on the literature search and selection of articles. The third workshop focused on assessing risk of bias, meta-analyses and GRADE. At the fourth workshop, participants discussed the results and prioritised the need for further research. Prior to each workshop, participants were sent written material about the workshop topic. Each workshop included an introduction to the topic, hands-on exercises, and small group and keynote discussions. All group members were offered financial compensation for attending, including preparation, and were invited to participate as co-authors of the article.

Results:
The project group decided the research question and selection criteria, and commented on the search strategy and results, and the need for further research. Importantly, the patient representatives gave valuable perspectives on the choice of intervention and outcomes, the interpretation of the results and the need for further research. One patient representative and two researchers participated as co-authors of the submitted systematic review. They participated in selecting studies, assessing the risk of bias and judging the quality of evidence, as well as commenting on the manuscript. In addition to the four workshops, they joined regular meetings focusing on conducting the systematic review.

Conclusions:
Through education, small group discussions, hands-on exercises and written material, patient representatives, clinicians and researchers contributed to a patient-focused systematic review.

Patient or healthcare consumer involvement:
Yes: they read the abstract.

Attachments: 

PDF icon Abstract to Cochrane Coll 2018HTM.pdf

Relevance to patients and consumers: 

Systematic reviews on effects of cancer rehabilitation are important to patients and patient organisations who are advocating for better follow-up of cancer survivors. To be given a chance to participate in this systematic review was an unique learning experience. Importantly, patient representatives need to be highly motivated to participate as a co-author, as conducting a systematic review is a challenging and time-consuming activity. Patient involvement in systematic reviews contributes to better evidence and better health decisions. This statement was written by a patient and a researcher.