Dataset Information

Outcomes and reflections on a consensus-building workshop for developing a spinal cord injury-related chronic pain research agenda.

ABSTRACT: Context/ Objective: Chronic pain following spinal cord injury (SCI) is a prevalent secondary health condition that significantly impacts quality of life (QoL). Although growing, the number of available effective pain management approaches for SCI is limited. Recognizing the need to "kick-start" activity on this topic, a consensus-building workshop on developing a research agenda for SCI-related chronic pain was held in 2006 with an expert panel. The present paper describes the processes of the consensus-workshop and its associated outcomes towards advancing the research agenda for SCI-related pain in Canada. A commentary on the current state of knowledge regarding SCI-related pain is also provided.

Methods

Thirty-nine stakeholders (researchers, clinicians, policy-makers, SCI advocates, and people with SCI) attended the consensus-workshop. A modified Delphi approach was employed to gain consensus on identifying the top five SCI pain research priorities for improving QoL post-SCI. As well, project planning along with infrastructure support opportunities were discussed.

Results

The top five pain research priorities were: 1) pain management and treatment; 2) measurement tools; 3) health services policy and advocacy; 4) knowledge transfer; and 5) mechanisms of pain. Recommendations related to the priorities and related resources were generated, and pilot work was initiated.

Conclusions

The consensus workshop provided an initial roadmap for research on SCI-related chronic pain, and supported five pilot projects on the identified priorities. Reflections on the current research landscape in Canada and abroad suggest increased activity towards addressing pain post-SCI but evidence-based approaches are still lacking.

SUBMITTER: Hitzig SL

PROVIDER: S-EPMC5472012 | biostudies-literature | 2017 May

REPOSITORIES: biostudies-literature

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Outcomes and reflections on a consensus-building workshop for developing a spinal cord injury-related chronic pain research agenda.

Hitzig Sander L SL Hunter Judith P JP Ballantyne Elena C EC Katz Joel J Rapson Linda L Craven B Catharine BC Boschen Kathryn A KA

The journal of spinal cord medicine 20160210 3

Context/ Objective: Chronic pain following spinal cord injury (SCI) is a prevalent secondary health condition that significantly impacts quality of life (QoL). Although growing, the number of available effective pain management approaches for SCI is limited. Recognizing the need to "kick-start" activity on this topic, a consensus-building workshop on developing a research agenda for SCI-related chronic pain was held in 2006 with an expert panel. The present paper describes the processes of the c ...[more]

PMID: 26828394

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Project description:BackgroundResearch priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease.MethodsThis two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established "Rare Voices" (RV), a 22-member stakeholder group of patients, parents, clinicians and researchers. Following capacity-building trainings, RV designed and conducted listening sessions with teen patients and parents of children with rare diseases to explore challenges, positive experiences, and ethical concerns. Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established measures to assess RV member engagement and satisfaction.ResultsFrom 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinating care, communication, accessing resources and care, impact on family unit, community and support in society, mental health and identity, ethical aspects of care, and uncertainty. RV members were highly engaged throughout the two-year project and reported high levels of satisfaction with the experience and research agenda.ConclusionsThrough capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare disease ELSI research that aligns with patients' and families' priorities. An environment of equal partnership and respect created a space for mutual learning where community members were empowered to shape the research agenda based on their collective experiences. The agenda recognizes the shared psychosocial and healthcare experiences of rare disease and offers practical areas of research to address patient and family needs.

Project description:BackgroundCurrently the health research system in Lao PDR is fragmented and largely donor led. Capacity among national public health institutes is limited to select priority research questions for funding.ObjectiveThe objective of this capacity building and practice-oriented study is to describe the process and outcome of the first National Health Research Agenda for Lao PDR and how the agenda contributes to institutional capacity of the Ministry of Health, in order to contribute to evidence-informed public health policy making.MethodThis activity used a mixed-methods approach. The overall design is based on principles of the interactive Learning and Action approach and consists out of 6 phases: (1) identification of needs, (2) shared analysis and integration, (3) nation-wide prioritization of research domains, (4) exploring specific research questions, (5) prioritization of research avenues, (6) dialogue and planning for action. The process involved interviews with experts in health policy and research (n = 42), telephone-based survey with district, provincial and national health staff (n = 135), a two-round Delphi consultation with experts in health policy and research (n = 33), and a workshop with policymakers, researchers, international organisations and civil society (n = 45) were held to gather data and conduct shared analysis.Results11 research domains were identified and prioritised: Health-seeking behaviour; Health system research; Health service provision; Mother and child health (MCH); Sexual & reproductive health; Health education; Non-communicable diseases (NCDs); Irrational drug use; Communicable diseases (CDs); Road traffic accidents; Mental health. Within these domains over 200 unique research questions were identified.ConclusionOur approach led to a comprehensive, inclusive, public health agenda for Lao PDR to realise better informed health policies. Questions on the agenda are action-oriented, originating in a desire to understand the problem so that immediate improvements can be made. The agenda is used within the MoH as a tool to fund and approve research.

Dataset Information

Outcomes and reflections on a consensus-building workshop for developing a spinal cord injury-related chronic pain research agenda.

Methods

Results

Conclusions

Publications

Outcomes and reflections on a consensus-building workshop for developing a spinal cord injury-related chronic pain research agenda.

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