Abstract
The personal, social and economic burden of chronic pain is enormous. Tremendous research efforts are being directed toward understanding, preventing, and managing chronic pain. Yet patients with chronic pain, clinicians and the public are sometimes poorly served by an evidence architecture that contains multiple structural weaknesses. These include incomplete research governance, a lack of diversity and inclusivity, inadequate stakeholder engagement, poor methodological rigour and incomplete reporting, a lack of data accessibility and transparency, and a failure to communicate findings with appropriate balance. These issues span pre-clinical research, clinical trials and systematic reviews and impact the development of clinical guidance and practice. Research misconduct and inauthentic data present a further critical risk. Combined, they increase uncertainty in this highly challenging area of study and practice, drive the provision of low value care, increase costs and impede the discovery of more effective solutions. In this focus article, we explore how we can increase trust in pain science, by examining critical challenges using contemporary examples, and describe a novel integrated conceptual framework for enhancing the trustworthiness of pain science. We end with a call for collective action to address this critical issue. Perspective: Multiple challenges can adversely impact the trustworthiness of pain research and health research more broadly. We present ENTRUST-PE, a novel, integrated framework for more trustworthy pain research with recommendations for all stakeholders in the research ecosystem, and make a call to action to the pain research community.
| Original language | English |
|---|---|
| Article number | 104736 |
| Journal | Journal of Pain |
| Early online date | 16 Nov 2024 |
| DOIs | |
| Publication status | E-pub ahead of print - 16 Nov 2024 |
Funding
EF has received grant from Versus Arthritis, Medical Research Council and UKRI funding bodies. GR has paid casual contract at the University of Oxford to teach Evidence-Based Medicine (EBM) and supervise research.Her expenses have been reimbursed for speaking at conferences and events, and she has received fees for speaking to and training coroners by the Judicial College. She is an Associate Editor of BMJ Evidence Based Medicine for which she receives a small annual remuneration. She is the Director of a limited company that has been independently contracted to conduct research and work in the private sector, including for AstraZeneca and Field Fisher. She receives remuneration from subscriptions to her personal SubStack publication. Between September 2017 and March 2021, she was financially supported by the NHS National Institute of Health Research (NIHR) School for Primary Care Research (SPCR), the Naji Foundation, and the Rotary Foundation to study for a Doctor of Philosophy (DPhil) at the University of Oxford. She has received grants to conduct research from NIHR SPCR and the Primary Care Research Trust of Birmingham and Midlands Research Practices Consortium Grant. CE has received research funding from the UK Medical Research Council, The UK National Institute for Health Research, Versus Arthritis UK, and the MayDay Fund. He has also received consultancy income from Orion Pharma for advice on digital therapeutics and research ecosystems, and Reckitt (contracted by Oxford University Innovations) for advice on children\u2019s chronic pain, and on pain communication. CE is a practitioner psychologist and consults on the development of psychological and interdisciplinary rehabilitation, currently working for 50% release from the University of Bath at Great Ormond Street Hospital, London UK to establish a new clinical programme. He receives author royalties from Oxford University Press for three books. EPZ received financial support from Grunenthal for research activities and advisory and lecture fees from Gr\u00FCnenthal, Novartis and Medtronic. She receives scientific support from the German Research Foundation (DFG), the Federal Ministry of Education and Research (BMBF), the Federal Joint Committee (G-BA) and the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777500. This Joint Undertaking receives support from the European Union\u2019s Horizon 2020 research and innovation programme and EFPIA. All money goes to the institutions (UKM) EPZ is working for. EPZ is council member of the International Association for the Study of Pain (IASP), board member of the German Pain Society, past chair of the Acute Pain SIG of the IASP, past chair of the subcommittee Acute and Chronic Pain and Palliative Medicine Pain Management of the European Society of Anaesthesiology and Intensive Care (ESAIC) and member of the research committee of the ESAIC. She is working member of the ESRA-prospect group ( https://esraeurope.org/pain-management/ ) and vice chair of the PANDOS research group ( https://www.esaic.org/research/research-groups/pandos/ ). She is scientific coordinator on the ERA-NET Neuron CO-Fund IT-Pain project ( https://itpain.org/ ) and Co-Coordinator of the ENTRUST-PE and INCHILD-Pain projects. EPZ is Deputy Editor in Chief for the EJA and the EJAIC and section editor for the EJP. NOC is a member of the Cochrane Central Editorial Board. Between 2020 and 2023 Neil was Co-ordinating Editor of the Cochrane Pain, Palliative and Supportive Care group, whose activities were funded by an infrastructure grant from the UK National Institute of Health and Care Research (NIHR). He is the Chair of the International Association for the Study of Pain (IASP) Methodology, Evidence Synthesis and Implementation special interest group. The ENTRUST-PE project (www.entrust-pe.org), on which this article is based, was funded by the Federal Ministry of Education and Research, Germany under the ERA-NET Neuron Co-Fund Scheme (Proposal ID NEURON_NW-016). EW has received grant funding from charities and UKRI funding bodies. FK receives research funding from the following NIH grants: 5UH3- AT009790; 239631/1-R01AG064947; 60062239/5R01-CA271220; 5R01-CA249959; 5R01- CA237892; 5R01-CA229425; 5UH3-AR077. Duke University, on behalf of Dr. Keefe, holds the copyright for an online pain coping skills training program called PainTRAINER. This program is free to all potential users. Neither Duke nor Dr. Keefe receives any funds from users of this online training program.360-04; 5UH3-AG067493; U24 NA114416; 5R21-DA052729; U01- DK123813; 5UG3-NR019196.
| Funders | Funder number |
|---|---|
| Versus Arthritis, Medical Research Council | |
| Primary Care Research Trust of Birmingham | |
| Medical Research Council | |
| European Federation of Pharmaceutical Industries and Associations | |
| Naji Foundation | |
| National Institute for Health and Care Research | |
| MAYDAY Fund | |
| Bundesministerium für Bildung und Forschung | |
| Rotary Foundation | |
| Horizon 2020 Framework Programme | |
| Deutsche Forschungsgemeinschaft | |
| Midlands Research Practices Consortium | |
| Versus Arthritis | |
| UK Research and Innovation | |
| Innovative Medicines Initiative | 777500 |
| National Institutes of Health | 60062239/5R01-CA271220, 5R01- CA237892, 5R01-CA229425, 239631/1-R01AG064947, 5UH3-AR077, 5UH3- AT009790, 5R01-CA249959 |
| ERA-NET Neuron Co-Fund Scheme | NEURON_NW-016 |
Keywords
- Engagement
- Equity
- Integrity
- Rigour
- Transparency
- Trustworthiness
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
- Anesthesiology and Pain Medicine