Aims and goals for Pain Registries SIG:
- Provide guidance on best practice in developing pain registries
- Represent pain registries within IASP.
- Support collaborators from medical centers, worldwide, to join or initiate pain registries for procedures, therapies or services
- Initiate and advance registry-related projects.
- Guide on funding to support the further expansion and development of registries.
- Encourage collaborators to present their findings at IASP meetings
- Promote registry-based trials
- Encourage existing medical registries (unrelated to pain specifically) to include some "agreed" standard pain outcomes as a minimum
Pain Registries in Australasia
Dr. Susie Lord
Clinical quality registries (CQRs) collect and analyse clinical performance data, and provide patients, clinicians and service planners with regular feedback on practice and outcomes.
By identifying variations in outcomes, registries allow for development of benchmarks and assessment of comparative performance at the clinic, regional, national, and international levels. Examining and learning from the practices of high-performing services, through a continuous quality improvement process, may lead to earlier identification and dissemination of best practices.
In 2012, the Australian and New Zealand pain management sector began a clinical quality registry named ePPOC (the electronic Persistent Pain Outcomes Collaboration) which has adults’ and children’s service arms—ePPOC1 and PaedePPOC2.
In parallel, the Australian Commission on Safety and Quality in Health Care developed a national framework to promote best practice design, development, operation and security of CQRs.3 Recently, the Australian government has moved toward CQR policy with its Draft National Clinical Quality Registry Strategy (2019-2029).4
This draft strategy articulates four government objectives:
1) partnering with patients in CQR development
2) assuring CQR quality by developing CQR standards and an accreditation scheme
3) maximising data utilisation through improved access and linkage
4) developing a sustainable funding model for national, prioritised CQRs
Chronic pain and ePPOC were absent from the draft CQR priority list, despite chronic pain being a driver for disease burden and cost in many of the prioritised chronic conditions. Continued advocacy may see this situation improve in the interests of the many people with chronic pain across both countries.
- EFIC Valencia September, 2019
A short informal meeting will be held for anyone attending the EFIC Valencia meeting: details will be emailed to the group and available at the poster. We will be presenting a poster at the forthcoming meeting in Valencia, which details the findings of a survey of Registries in the USA and Germany (abstract number A-1021-0081-01308 Creating a registry of pain registries.)
A student supervised by Dr Cathy Price will completing the rest of the world over the autumn with the aim of presenting this work in Amsterdam.
- SIG Business meeting - IASP World Congress on Pain Amsterdam, Netherlands - August 2020
Follow the steps below to access the Pain Registries SIG online discussion forum, Groupsite:
- Login into your IASP account
- Click on "My Account"
- Scroll down to "My Group Memberships"
- Click on your listed SIG - "Pain Registries"
Recent research articles on pain registries recently published
- Baca Q, Marti F, Poblete B, Gaudilliere B, Aghaeepour N, Angst MS. Predicting Acute Pain After Surgery: A Multivariate Analysis. Annals of surgery. 2019 Jun.
- Freytag A, Scriba B, Kaiser U, Meissner W. Pain registries and similar data collections: A systematic review. Schmerz (Berlin, Germany). 2016 Dec;30(6):568-75.
- Lord SM, Tardif HP, Kepreotes EA, Blanchard M, Eagar K. The Paediatric electronic Persistent Pain Outcomes Collaboration (PaedePPOC): establishment of a binational system for benchmarking children's persistent pain services. Pain. 2019 Mar 01.PMID: 30839427.
- Nicholas MK, Costa DS, Blanchard M, Tardif H, Asghari A, Blyth FM. Normative data for common pain measures in chronic pain clinic populations: closing a gap for clinicians and researchers. Pain. 2019 May 1;160(5):1156-65.
- Price CM, C. de C. Williams A, Smith BH, Bottle A. Implementation of Patient‐Reported Outcomes (PROMs) from specialist pain clinics in England and Wales: Experience from a nationwide study. European Journal of Pain. 2019 Apr 26. https://doi.org/10.1002/ejp.1406
- Price C, de C Williams AC, Smith BH, Bottle A. The National Pain Audit for specialist pain services in England and Wales 2010–2014. British Journal of Pain. 2018 Dec 7 https://doi.org/10.1177/2049463718814277
- Stamer UM, Ehrler M, Lehmann T, Meissner W, Fletcher D. Pain-related functional interference in patients with chronic neuropathic postsurgical pain: an analysis of registry data. Pain. 2019 Mar.
- Tardif H, Arnold C, Hayes C, Eagar K. Establishment of the Australasian electronic Persistent Pain Outcomes Collaboration. Pain Med 2017;18:1007–18.
Other articles of relevance
- Australian Commission on Safety and Quality in Health Care. Framework for Australian clinical quality registries. 2014. https://www.safetyandquality.gov.au/wp-content/uploads/2014/09/Framework-for-Australian-Clinical-Quality-Registries.pdf
- Australian Government, Department of Health. Draft National Clinical Quality Registry Strategy: Maximising the Potential of Australian Clinical Quality Registries (2019-2029). May 2019. https://www.health.gov.au/internet/main/publishing.nsf/Content/Draft_National_%20CQR_Strategy
- Hoque DM, Kumari V, Hoque M, Ruseckaite R, Romero L, Evans SM. Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review. PloS one. 2017 Sep 8;12(9):e0183667.
Chair - Cathy Price
Secretary - Ruth Zaslansky
Interim Committee Members (with special interests)
Pain in Children - Susie Lord
Perioperative Pain - Winifried Meissner
Special Interest (TBD) - Sean Mackey
Chronic Pain - Manon Choiniere
Developing countries - TBD
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