Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research

Patricia Poulin; Yaadwinder Shergill; Heather Romanow; Jason W Busse; Christine T Chambers; Lynn Cooper; Paula A Forgeron; Anita Olsen Harper; Maria Hudspith; Alfonso Iorio; Chitra Lalloo; Carley Ouellette; Rosalind Robertson; Sandy Smeenk; Bonnie Stevens; Jennifer Stinson

doi:10.1080/24740527.2018.1433959

Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research

Can J Pain. 2018 Jul 19;2(1):191-204. doi: 10.1080/24740527.2018.1433959. eCollection 2018.

Authors

Patricia Poulin^{1

2}, Yaadwinder Shergill^{3

4}, Heather Romanow⁴, Jason W Busse^{5

6}, Christine T Chambers⁷, Lynn Cooper⁸, Paula A Forgeron^{9

10

11}, Anita Olsen Harper¹², Maria Hudspith¹³, Alfonso Iorio^{6

14

15

16}, Chitra Lalloo^{17

18

19}, Carley Ouellette²⁰, Rosalind Robertson²¹, Sandy Smeenk²², Bonnie Stevens^{23

24

25}, Jennifer Stinson^{18

19

23

26}

Affiliations

¹ The Ottawa Hospital Research Institute, The Ottawa Hospital Pain Clinic, Ottawa, ON, Canada.
² School of Psychology, Faculty of Social Sciences, Department of Anesthesiology and Pain Medicine, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
³ Centre for Collaborative Health, Oakville, ON, Canada.
⁴ The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁵ Department of Anesthesia, McMaster University, Hamilton, ON, Canada.
⁶ Department of Health Research Methods, Evidence and Impact, The Michael G. DeGroote Institute for Pain Research and Care, McMaster University Hamilton Health Sciences Centre, Hamilton, ON, Canada.
⁷ Pediatrics and Psychology & Neuroscience, Neuroscience, Dalhousie University and IWK Health Centre, Halifax, NS, Canada.
⁸ Canadian Pain Coalition, Oshawa, ON, Canada.
⁹ School of Nursing, University of Ottawa, Ottawa, ON, Canada.
¹⁰ Faculty of Medicine, Dalhousie University.
¹¹ Children's Hospital of Easter Ontario Research Institute, Ottawa, ON, Canada.
¹² Independent Researcher, Ottawa, ON, Canada.
¹³ Pain BC, Vancouver, BC, Canada.
¹⁴ Department of Medicine.
¹⁵ Health Information Research Unit.
¹⁶ Hemophilia Clinic, McMaster University, Hamilton, ON, Canada.
¹⁷ Improving Outcomes in Child Health Through Technology (iOUCH) Lab.
¹⁸ Child Health Evaluative Sciences, The Hospital for Sick Children, Institute of Health Policy, Management and EvaluationToronto, ON, Canada.
¹⁹ Child Health Evaluative Sciences, Toronto, ON, Canada.
²⁰ School of Nursing, The Peter Gilgan Centre for Research and Learning, Toronto, ON, Canada.
²¹ School of Nursing, McMaster University, Hamilton, ON, Canada.
²² Toronto, ON, Canada.
²³ The ILC Chronic Pain and Ehlers Danlos Charitable Foundation, Oakville, ON, Canada.
²⁴ University of Toronto Centre for the Study of Pain.
²⁵ Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
²⁶ Chronic Pain Program, The Hospital for Sick Children.

Abstract
in English, French

Background: Chronic pain affects more than 6 million Canadians. Patients need to be involved in setting research priorities to ensure a focus on areas important to those who will be most impacted by the results.

Aims: The aim of this study was to leverage patient experiences to identify chronic pain research priorities in Canada.

Method: The process was informed by the James Lind Alliance. After gathering an exhaustive list of questions using surveys, town hall meetings, interviews, and social media consultations, we used a computerized Delphi with four successive iterations to select the final list of research priorities. The final Delphi round was conducted by a panel of ten patients living with chronic pain and ten clinicians from different disciplines.

Results: We received more than 5000 suggestions from 1500 people. The Delphi process led to the identification of 14 questions fitting under the following 4 themes: (1) improving knowledge and competencies in chronic pain; (2) improving patient-centered chronic pain care; (3) preventing chronic pain and reducing associated symptoms; and (4) improving access to and coordination of patient-centered chronic pain care. Challenges included the issue of chronic pain being ubiquitous to many diseases, leading to many initial suggestions focusing on these diseases. We also identified the need for further engagement efforts with marginalized groups in order to validate the priorities identified or identify different sets of priorities specific to these groups.

Conclusion: The priorities identified can guide patient-oriented chronic pain research to ultimately improve the care offered to people living with chronic pain.

Contexte: La douleur chronique affecte plus de six millions de Canadiens. Les patients doivent participer à l’établissement des priorités de recherche afin de s’assurer que l’accent soit mis sur les aspects les plus importants aux yeux de ceux qui seront les plus touchés par les résultats.Buts: Tirer parti de l’expérience des patients afin d’établir les priorités de la recherche en matière de douleur chronique au Canada.Méthode: Le processus s’est impiré de la James Lind Alliance. Après avoir dressé une liste exhaustive de questions à l’aide d’enquêtes, d’assemblées publiques, d’entrevues et de consultations via les médias sociaux, nous avons utilisé un processus Delphi informatisé comprenant quatre itérations successives afin de sélectionner la liste finale de priorités de recherche. Le dernier tour du processus Delphi a été mené par un panel composé de 10 patients souffrant de douleur chronique et de 10 cliniciens issus de différentes disciplines.Résultats: Nous avons reçu plus de 5 000 suggestions provenant de 1 500 personnes. Le processus Delphi a permis de déterminer 14 questions qui relèvent des quatre thèmes suivants : (1) améliorer les connaissances et les compétences en matière de douleur chronique ; (2) améliorer les soins axés sur le patient pour contrer la douleur chronique; (3) prévenir la douleur chronique et réduire les symptômes qui y sont associés ; et (4) améliorer l’accès aux soins axés sur le patient pour contrer la douleur chronique et la coordination entre ces soins. Parmi les défis qui se sont présentés, on compte le fait que la douleur chronique soit omniprésente dans de nombreuses maladies, de sorte qu’un grand nombre des suggestions initialement formulées portaient sur ces maladies. Nous avons également déterminé que davantage d’efforts devaient être déployés pour assurer la participation des groupes marginalisés dans le but de valider les priorités déterminées ou déterminer d’autres priorités spécifiques à ces groupes.Conclusion: Les priorités déterminées peuvent orienter la recherche axée sur le patient pour contrer la douleur chronique dans le but ultime d’améliorer les soins offerts aux personnes qui souffrent de douleur chronique.

Keywords: Delphi; chronic pain; patient-oriented research; priority-setting partnership.

© 2018 Patricia Poulin, Yaadwinder Shergill, Heather Romanow, Jason W. Busse, Christine T. Chambers, Lynn Cooper, Paula A. Forgeron, Anita Olsen Harper, Maria Hudspith, Alfonso Iorio, Chitra Lalloo, Carley Ouellettet, Rosalind Robertson, Sandy Smeenk, Bonnie Stevens, and Jennifer Stinson. Published with license by Taylor & Francis Group, LLC.

Grants and funding

This project was funded through a Canadian Institutes of Health Research Collaboration Grant with matched funding from the Michael G. DeGroote Institute for Pain Research and Care at McMaster University and The Ottawa Hospital Pain Clinic Audrey Foster Research Endowment Fund.

Abstract in English, French

Grants and funding

Abstract
in English, French