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Background: Malnutrition is one the greatest global health challenges of our generation, leading to the increased utilisation of healthcare resources, as well as morbidity and mortality. Research has primarily been driven by industry, academia and clinical working groups and has had little involvement from patients and carers. The project described in the present study aimed to establish a priority setting partnership allowing patients, carers and healthcare professionals an opportunity to influence the research agenda. Methods: A national survey was conducted to gather malnutrition uncertainties and identify key issues (i.e. areas within scope where an evidence‐base is lacking) from those with experience of malnutrition. Uncertainties were analysed according to themes. Similar questions were grouped and summary questions were developed. A second survey was conducted and respondents were asked to choose their 10 most important summary questions. A workshop was conducted to finalise the top 10 research priorities from the most frequently indicated uncertainties on the interim survey. Results: Overall, 1128 uncertainty questions were submitted from 268 people. The interim survey had 71 responses and a list of the top 26 questions was generated for the workshop. There were 26 questions discussed, ranked and agreed by healthcare professionals, carers and patients at the workshop. The top 10 research priorities were then chosen. These included questions on oral nutritional supplements, vulnerable groups, screening, community care, use of body mass index and technology. Conclusions: The top 10 research priorities in malnutrition and nutritional screening have been identified from a robust process involving patients, carers and healthcare professionals. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to identify the top 10 research priorities on reducing and stopping psychiatric medication that reflect the perspectives and unmet needs of three key stakeholder groups (people with lived experience, family members/carers/supporters and healthcare professionals)., Methods: A priority-setting partnership was conducted using the James Lind Alliance's seven-step process. This involved (1) creating an international Steering Group of key stakeholder representatives and (2) identifying potential partners; (3) gathering stakeholders' uncertainties about reducing and stopping psychiatric medication using an online survey and summarising the survey responses; (4) checking the summary questions against existing evidence and verifying uncertainties; (5) shortlisting the questions using a second online survey; (6) determining the top 10 research questions through a prioritisation workshop; and (7) disseminating the results., Results: A total of 3635 questions were collected in the initial survey from 884 respondents of which 32 questions were verified as uncertainties. These questions were then ranked in a second online survey by 526 respondents and the findings discussed in a final prioritisation workshop by 30 participants to produce the final top 10 list of research questions. These questions cover a range of areas including the most effective ways of safely reducing/stopping psychiatric medication and providing support to individuals undergoing the discontinuation process, as well as the best ways to educate healthcare professionals on this topic., Conclusion: The top 10 list of research priorities was produced through extensive engagement with key stakeholders and highlights important uncertainties and gaps in the existing evidence base that need to be addressed by future research., Competing Interests: Competing interests: Cathal Cadogan (CC) sits on the Board of Directors for the Alliance for Benzodiazepine Best Practices; a not-for-profit organisation with the mission to inform evidence-based improvements in the use of benzodiazepines and Z-drugs. Anne Cody (AC) works at the Health Research Board, who part-funded the process The grant did not contain any expectation or condition of being included in the Steering Group. Adele Framer (AF) is the founder of SurvivingAntidepressants.org which is an online community of volunteers providing peer support for tapering all psychiatric drugs and their withdrawal syndromes. AF sit on the Board of Directors for International Institute for Psychiatric Drug Withdrawal a not-for-profit organisation which supports research and practice-based knowledge that will facilitate safe reduction of and withdrawal from psychiatric drugs and is President of the Psychotropic Deprescribing Council. Mark Horowitz (MH) is a collaborating investigator on the RELEASE and RELEASE+ trials in Australia evaluating hyperbolic tapering of antidepressants against tapering as usual. MH has received honoraria for lectures about deprescribing from several NHS Trusts, and universities in the US and the UK. MH is a co-founder of and consultant to Outro Health digital clinic which aims to help patients in the US to help stop no longer needed antidepressant treatment. Christy Huff (CH) is the Medical Director of the Benzodiazepine Information Coalition, a not-for-profit organisation with the mission of educating about the potential adverse effects of benzodiazepines taken as prescribed. Nicole Lamberson (NL) is a Medical Board Member of the Benzodiazepine Information Coalition, a not-for-profit organisation with the mission of educating about the potential adverse effects of benzodiazepines taken as prescribed. NL is cofounder of the Inner Compass Initiative's The Withdrawal Project, a not-for-profit organisation which seeks to help people make more informed choices about psychiatric diagnoses and drugs and build community with like-minded others thinking critically about today's mental health industry. NL is an Associate Member of the International Institute for Psychiatric Drug Withdrawal, a not-for-profit organisation which supports research and practice-based knowledge that will facilitate safe reduction of and withdrawal from psychiatric drugs. Luke Montagu (LM) is cofounder of the Council for Evidence-based Psychiatry which seeks to communicate evidence of the potentially harmful effects of psychiatric drugs to the people and institutions in the UK that can make a difference. All other authors declare no competing interests., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Access to GP appointments is increasingly challenging in many high-income countries, with an overstretched workforce and rising demand. Various access systems have been developed and evaluated internationally., Aim: To systematically consolidate the current international evidence base related to different types of GP access systems., Design and Setting: Scoping review examining international literature., Method: Literature searches were run across relevant databases in May 2022. Title, abstract, and full-text screenings were carried out. Data from included studies were extracted and mapped to synthesise the components and aims within different GP access systems., Results: In total, 49 studies were included in the review. The majority of these were set in the UK. Some access systems featured heavily in the literature, such as Advanced Access, telephone triage, and online consultations, and others less so. There were two key strategies adopted by systems that related to either changing appointment capacity or modifying patient pathways. Components related to these strategies are summarised and illustrated as a schematic representation. Most rationales behind access systems were practice, rather than patient, focused. 'Add-on' systems and aims for efficiency have become more popular in recent years., Conclusion: This synthesis provides a useful tool in understanding access systems' aims, design, and implementation. With focus on alleviating demand, patient-focused outcomes appear to be underinvestigated and potentially overlooked during design and implementation. More recently, digital services have been promoted as offering patient choice and convenience. But a context where demand outweighs resources challenges the premise that extending choice is possible., (© The Authors.)

Introduction: James Lind Alliance (JLA) Priority Setting Partnerships (PSPs) produce 'Top 10' lists of health and care research priorities through a structured, shared decision-making process with patients or service users, carers and health or care professionals who identify questions that are most important to them. To date, over 150 PSPs in different areas of health and care have published research priorities. Some PSPs share similar priorities, which could be combined, promoted and addressed through collaborative research to increase value and reduce research waste., Aim: The aim of this study was to identify overarching themes common to JLA PSP priorities across different areas of health and care., Methods: Our analysis included 'Top 10' research priorities produced by UK-based JLA PSPs between 2016 and 2020. The priorities were coded deductively by the Health Research Classification System (HRCS) health category and research activity. We then carried out online workshops with patients, service users and carers to generate new codes not already captured by this framework. Within each code, multistakeholder inductive thematic analysis was used to identify overarching themes, defined as encompassing priorities from three or more PSPs covering two or more health categories. We used codesign methods to produce an interactive tool for end users to navigate the overarching themes., Results: Five hundred and fifteen research priorities from 51 PSPs were included in our analysis. The priorities together encompassed 20 of 21 HRCS health categories, the most common being 'generic health relevance' (22%), 'mental health' (18%) and 'musculoskeletal' (14%). We identified 89 overarching themes and subthemes, which we organised into a hierarchy with seven top-level themes: quality of life, caregivers and families, causes and prevention, screening and diagnosis, treatment and management, services and systems and social influences and impacts., Conclusion: There are many overarching themes common to research priorities across multiple areas of health and care. To facilitate new research and research funding, we have developed an interactive tool to help researchers, funders and patients or service users to explore these priority topics. This is freely available to download online., Patient or Public Contribution: Patients or service users and carers were involved throughout the study, including deciding the aims, designing the study, analysing priorities to identify themes, interpreting and reporting the findings., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: The priorities for UK emergency medicine research were defined in 2017 by a priority setting partnership coordinated by the Royal College of Emergency Medicine in collaboration with the James Lind Alliance (JLA). Much has changed in the last 5 years, not least a global infectious disease pandemic and a significant worsening of the crisis in the urgent and emergency care system. Our aim was to review and refresh the emergency medicine research priorities., Methods: A steering group including patients, carers and healthcare professionals was established to agree to the methodology of the refresh. An independent adviser from the JLA chaired the steering group. The scope was adult patients in the ED. New questions were invited via an open call using multiple communications methods ensuring that patients, carers and healthcare professionals had the opportunity to contribute. Questions underwent minisystematic (BestBETs) review to determine if the question had been answered, and the original 2017 priorities were reviewed. Any questions that remained unanswered were included in an interim prioritisation survey, which was distributed to patients, carers and healthcare professionals. Rankings from this survey were reviewed by the steering group and a shortlist of questions put forward to the final workshop, which was held to discuss and rank the research questions in order of priority., Results: 77 new questions were submitted, of which 58 underwent mini-systematic review. After this process, 49 questions (of which 32 were new, 11 were related to original priorities and 6 unanswered original priorities were carried forward) were reviewed by the steering group and included in an interim prioritisation survey. The interim prioritisation survey attracted 276 individual responses. 26 questions were shortlisted for discussion at the final prioritisation workshop, where the top 10 research priorities were agreed., Conclusion: We have redefined the priorities for emergency medicine research in the UK using robust and established methodology, which will inform the agenda for the coming years., Competing Interests: Competing interests: TG was paid by the Royal College of Emergency Medicine for her role as chair of the steering group., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To explore whether a James Lind Alliance Priority Setting Partnership could provide insights on knowledge translation within the field of degenerative cervical myelopathy (DCM)., Design: Secondary analysis of a James Lind Alliance Priority Setting Partnership process for DCM., Participants and Setting: DCM stake holders, including spinal surgeons, people with myelopathy and other healthcare professionals, were surveyed internationally. Research suggestions submitted by stakeholders but considered answered were identified. Sampling characteristics of respondents were compared with the overall cohort to identify subgroups underserved by current knowledge translation., Results: The survey was completed by 423 individuals from 68 different countries. A total of 22% of participants submitted research suggestions that were considered 'answered'. There was a significant difference between responses from different stakeholder groups (p<0.005). Spinal surgeons were the group which was most likely to submit an 'answered' research question. Respondents from South America were also most likely to submit 'answered' questions, when compared with other regions. However, there was no significant difference between responses from different stakeholder regions (p=0.4)., Conclusions: Knowledge translation challenges exist within DCM. This practical approach to measuring knowledge translation may offer a more responsive assessment to guide interventions, complementing existing metrics., Competing Interests: Competing interests: BD, JB, ODM, IS, ES, MGF and MRNK have voluntary roles at Myelopathy.org, an international DCM charity., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: AO Spine RECODE-DCM was a multi-stakeholder priority setting partnership (PSP) to define the top ten research priorities for degenerative cervical myelopathy (DCM). Priorities were generated and iteratively refined using a series of surveys administered to surgeons, other healthcare professionals (oHCP) and people with DCM (PwDCM). The aim of this work was to utilise word clouds to enable the perspectives of people with the condition to be heard earlier in the PSP process than is traditionally the case. The objective was to evaluate the added value of word clouds in the process of defining research uncertainties in National Institute for Health Research (NIHR) James Lind Alliance (JLA) Priority Setting Partnerships., Methods: Patient-generated word clouds were created for the four survey subsections of the AO Spine RECODE-DCM PSP: diagnosis, treatment, long-term management and other issues. These were then evaluated as a nested methodological study. Word-clouds were created and iteratively refined by an online support group of people with DCM, before being curated by the RECODE-DCM management committee and expert healthcare professional representatives. The final word clouds were embedded within the surveys administered at random to 50% of participants. DCM research uncertainties suggested by participants were compared pre- and post-word cloud presentation., Results: A total of 215 (50.9%) participants were randomised to the word cloud stream, including 118 (55%) spinal surgeons, 52 (24%) PwDCM and 45 (21%) oHCP. Participants submitted 434 additional uncertainties after word cloud review: word count was lower and more uniform across each survey subsections compared to pre-word cloud uncertainties. Twenty-three (32%) of the final 74 PSP summary questions did not have a post-word cloud contribution and no summary question was formed exclusively on post-word cloud uncertainties. There were differences in mapping of pre- and post-word cloud uncertainties to summary questions, with greater mapping of post-word cloud uncertainties to the number 1 research question priority: raising awareness. Five of the final summary questions were more likely to map to the research uncertainties suggested by participants after having reviewed the word clouds., Conclusions: Word clouds may increase the perspective of underrepresented stakeholders in the research question gathering stage of priority setting partnerships. This may help steer the process towards research questions that are of highest priority for people with the condition., (© 2023. The Author(s).)

Background: Colorectal cancer (CRC) is the third most frequent cause of cancer death in the word. Which aspects of research into CRC should be accorded the highest priority remains unclear, because relevant stakeholders, such as patients, nurses, and physicians, played hardly any part in the development of research projects. The goal in forming the CRC Priority-Setting Partnership (PSP) was to bring all relevant stakeholders together to identify and prioritize unresolved research questions regarding the diagnosis, treatment, and follow-up of CRC., Methods: The CRC PSP worked in cooperation with the British James Lind Alliance. An initial nationwide survey was conducted, and evidence uncertainties were collected, categorized, summarized, and compared with available evidence from the literature. The as-yet unresolved questions were (provisionally) ranked in a second national wide survey, and at a concluding consensus workshop all stakeholders came together to finalize the rankings in a nominal group process and compile a top 10 list., Results: In the first survey (34% patients, 51% healthcare professionals, 15% unknown), 1102 submissions were made. After exclusion of duplicates and previously resolved questions, 66 topics were then ranked in the second survey (56% patients, 39% healthcare professionals, 5% unknown). This interim ranking process revealed distinct differences between relatives and healthcare professionals. The final top 10 list compiled at the consensus workshop covers a wide area of research topics., Conclusion: All relevant stakeholders in the CRC PSP worked together to identify and prioritize the top 10 evidence uncertainties. The results give researchers and funding bodies the opportunity to address the most patient-relevant research projects. It is the first detailed description of a PSP in Germany, and the first PSP on CRC care worldwide., (© 2022. The Author(s).)

Objectives: To establish a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to identify research priorities relevant to the health and social care needs of adults with lived experience of recent and/or historical sexual violence/abuse., Participants: Adults (aged 18+ years) with lived experience of sexual violence/abuse (ie, 'survivors') were consulted for this PSP, alongside healthcare and social care professionals who support survivors across the public, voluntary, community, independent practice and social enterprise sectors., Methods: In line with standard JLA PSP methodology, participants completed an initial online survey to propose research questions relevant to the health and social care needs of survivors. Research questions unanswered by current evidence were identified, and a second online survey was deployed to identify respondents' priorities from this list. Questions prioritised through the second survey were presented at a consensus meeting with key stakeholders to agree the top 10 research priorities using a modified nominal group technique approach., Results: 223 participants (54% survivors) provided 484 suggested questions. Seventy-five unique questions unanswered by research were identified and subsequently ranked by 343 participants (60% survivors). A consensus meeting with 31 stakeholders (42% survivors) examined the top-ranking priorities from the second survey and agreed the top 10 research priorities. These included research into forms of support and recovery outcomes valued by survivors, how to best support people of colour/black, Asian and minority ethnic and lesbian, gay, bisexual, transgender, and queer (LGBTQ+) survivors, improving access to high-quality psychological therapies, reducing public misconceptions/stigma, the impact of involvement in the criminal justice system on well-being, and how physical and mental health services can become more 'trauma informed'., Conclusions: These research priorities identify crucial gaps in the existing evidence to better support adult survivors of sexual violence and abuse. Researchers and funders should prioritise further work in these priority areas identified by survivors and the professionals who support them., Competing Interests: Competing interests: Non-commercial interests: FV and RM-A have received research funding from the UKRI Violence, Abuse and Mental Health Network focusing on the long-term needs of survivors of sexual violence. FV and EL received several research grants from the National Institute of Health Research for the development and evaluation of psychological therapies for individuals with severe mental health difficulties (Advanced Fellowship Programme; Research for Patient Benefit Programme, Health Technology Assessment Programme, and the Health Service & Delivery Research Programme; and Postdoctoral Fellowship Programme and Development and Skills Enhancement Award), including trials focusing on the mental health needs of trauma survivors. EH is the director of The Lighthouse, an NHS service providing health, therapy, advocacy and child-friendly justice for children who experience sexual abuse in north London. All other authors have no non-commercial interests to declare. Commercial interests: EH is the director of a management consultancy specialising in the fields of whole system transformation and child sexual abuse services (Harewood Consultancy). All other authors have no commercial interests to declare., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Study Design: Survey., Introduction: AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (AO Spine RECODE-DCM) is an international initiative that aims to accelerate knowledge discovery and improve outcomes by developing a consensus framework for research. This includes defining the top research priorities, an index term and a minimum data set (core outcome set and core data elements set - core outcome set (COS)/core data elements (CDE))., Objective: To describe how perspectives were gathered and report the detailed sampling characteristics., Methods: A two-stage, electronic survey was used to gather and seek initial consensus. Perspectives were sought from spinal surgeons, other healthcare professionals and people with degenerative cervical myelopathy (DCM). Participants were allocated to one of two parallel streams: (1) priority setting or (2) minimum dataset. An email campaign was developed to advertise the survey to relevant global stakeholder individuals and organisations. People with DCM were recruited using the international DCM charity Myelopathy.org and its social media channels. A network of global partners was recruited to act as project ambassadors. Data from Google Analytics, MailChimp and Calibrum helped optimise survey dissemination., Results: Survey engagement was high amongst the three stakeholder groups: 208 people with DCM, 389 spinal surgeons and 157 other healthcare professionals. Individuals from 76 different countries participated; the United States, United Kingdom and Canada were the most common countries of participants., Conclusion: AO Spine RECODE-DCM recruited a diverse and sufficient number of participants for an international PSP and COS/CDE process. Whilst PSP and COS/CDE have been undertaken in other fields, to our knowledge, this is the first time they have been combined in one process.

Study Design: Overview of the methods used for a James Lind Alliance (JLA) Priority Setting Partnership (PSP)., Objectives: The objectives of this article are to (i) provide a brief overview of the JLA-facilitated PSP process; (ii) outline how research uncertainties were initially processed in the AO Spine RECODE-DCM PSP; and (iii) delineate the methods for interim prioritization and the priority setting workshop., Methods: A steering group was created to define the scope for the PSP, organize its activities, and establish protocols for decision-making. A survey was created asking what questions on the diagnosis, treatment, and long-term management of DCM should be answered by future research. Results from the survey were sorted into summary questions. Several databases were searched to identify literature that already answered these summary questions. The final list of summary questions was distributed by survey for interim prioritization. Participants were asked to select the top ten most important summary questions. The questions that were ranked the highest were discussed at an in-person consensus workshop., Results: The initial survey yielded a total of 3404 potential research questions. Of the in-scope submissions, 988 were related to diagnosis, 1324 to treatment, and 615 to long-term management of DCM. A total of 76 summary questions were developed to reflect the original submissions. Following a second survey, a list of the top 26 interim priorities was generated and discussed at the in-person priority setting workshop., Conclusions: PSPs enable research priorities to be identified that consider the perspectives and interests of all relevant stakeholders.

Objectives: AO Spine REsearch objectives and Common Data Elements for Degenerative Cervical Myelopathy [RECODE-DCM] is a multi-stakeholder consensus process aiming to promote research efficiency in DCM. It aims to establish the top 10 research uncertainties, through a James Lind Alliance Priority Setting Partnership [PSP]. Through a consensus process, research questions are generated and ranked. The inclusion of people with cervical myelopathy [PwCM] is central to the process. We hypothesized that presenting PwCM experience through word cloud generation would stimulate other key stakeholders to generate research questions better aligned with PwCM needs. This protocol outlines our plans to evaluate this as a nested methodological study within our PSP., Methods: An online poll asked PwCM to submit and vote on words associated with aspects of DCM. After review, a refined word list was re-polled for voting and word submission. Word clouds were generated and an implementation plan for AO Spine RECODE-DCM PSP surveys was subsequently developed., Results: Seventy-nine terms were submitted after the first poll. Eighty-seven refined words were then re-polled (which added a further 39 words). Four word clouds were generated under the categories of diagnosis, management, long-term effects, and other. A 1:1 block randomization protocol to assess word cloud impact on the number and relevance of PSP research questions was generated., Conclusions: We have shown it is feasible to work with PwCM to generate a tool for the AO Spine RECODE-DCM nested methodological study. Once the survey stage is completed, we will be able to evaluate the impact of the word clouds. Further research will be needed to assess the value of any impact in terms of stimulating a more creative research agenda.

This study aimed to bring together people who smoke or vape, people who do not smoke and healthcare professionals to identify and agree priorities for electronic cigarette research in the UK. We carried out a priority setting partnership, guided by the methodology developed by the James Lind Alliance involving five key stages: initiation, consultation, collation, prioritisation and dissemination. A total of 765 people submitted 1887 questions that they wanted answered by research. Questions were organised into themes, merged and rewritten as summary questions, with 52 unique questions going forward to the prioritisation survey. Participants then ranked their top 10 questions. Following this ranking exercise, the top 26 were identified by selecting the most frequently prioritised questions adjusting for representative stakeholder group. These were put forward for discussion in the final prioritisation workshop, whereby the top 10 electronic cigarette research questions were agreed. The list of priorities identified will be of interest to researchers and funders of electronic cigarette research and will hopefully direct future research and funding calls. These priorities provide insight into the questions that matter to people who are using or concerned about e-cigarettes, including frontline professionals.

Objectives: To identify research priorities for hypertensive disorders of pregnancy from individuals with lived experience and healthcare professionals., Design: Prospective surveys and consensus meetings using principles outlined by the James Lind Alliance., Setting: UK., Methods: A steering group was established and 'uncertainties' were gathered using an online survey and literature search. An interim online survey ranked long-listed questions and the top 10 research questions were reached by consensus at a final prioritisation workshop., Participants: Women, partners, relatives and friends of those with lived experience of pregnancy hypertension, researchers and healthcare professionals., Results: The initial online survey was answered by 278 participants (180 women with lived experience, 9 partners/relatives/friends, 71 healthcare professionals and 18 researchers). Together with a literature search, this identified 764 questions which were refined into 50 summary questions. All summary questions were presented in an interim prioritisation survey that was answered by 155 participants (87 women with lived experience, 4 partners/relatives/friends, 49 healthcare professionals and 15 researchers). The top 25 highest ranked questions were considered by the final prioritisation workshop. The top 10 uncertainties were identified by consensus and ranked as follows in order of priority: long-term consequences of pregnancy hypertension (for the woman and baby), short-term complications of pregnancy hypertension (for the woman and baby), screening tests for pre-eclampsia, prevention of long-term problems (for the woman and baby), causes of pregnancy hypertension, prevention of recurrent pregnancy hypertension, educational needs of healthcare professionals, diagnosis of pre-eclampsia, management of pregnancy hypertension, provision of support for women and families., Conclusions: Research priorities shared by those with lived experience of pregnancy hypertension and healthcare professionals have been identified. Researchers should use these to inform the choice of future studies in this area., Competing Interests: Competing interests: LC reports grants from the National Institute for Health Research during the conduct of the study. CG reports grants from Medical Research Council during the conduct of the study; grants from National Institute for Health Research, Mason Medical Research foundation, Canadian Institute for Health Research, Rosetrees Foundation, grants and personal fees from Chiesi Pharmaceuticals, outside the submitted work. HM reports grants from the British Heart Foundation. RJM reports grants from NIHR, grants from Stroke Association, outside the submitted work; and has received BP monitors for research from Omron. He occasionally receives travel expenses/honoraria for speaking at conferences. The latter are paid to Green Templeton College Oxford. All additional interests are outside the direct remit of the submitted work. All other authors declare no competing interests., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)

Objective: To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals., Methods: Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'., Results: 192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent., Conclusions: Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF., Competing Interests: Competing interests: CT reports personal fees from Novartis and Vifor and non-financial support from Roche outside the submitted work. RL reports personal fees from Yale University Open Data Access Project, outside the submitted work. KB reports other from Animal Free Research UK, and other funding from Wye Valley NHS Trust, outside the submitted work. JM reports personal fees from Bristol Myers Squibb, outside the submitted work. RH reports personal fees from Novartis, outside the submitted work., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Study Design: Mixed-method consensus process., Objectives: Degenerative cervical myelopathy (DCM) is a common and disabling condition that arises when mechanical stress damages the spinal cord as a result of degenerative changes in the surrounding spinal structures. RECODE-DCM ( RE search Objectives and C ommon D ata E lements for D egenerative C ervical M yelopathy) aims to improve efficient use of health care resources within the field of DCM by using a multi-stakeholder partnership to define the DCM research priorities, to develop a minimum dataset for DCM clinical studies, and confirm a definition of DCM., Methods: This requires a multi-stakeholder partnership and multiple parallel consensus development processes. It will be conducted via 4 phases, adhering to the guidance set out by the COMET (Core Outcomes in Effectiveness Trials) and JLA (James Lind Alliance) initiatives. Phase 1 will consist of preliminary work to inform online Delphi processes (Phase 2) and a consensus meeting (Phase 3). Following the findings of the consensus meeting, a synthesis of relevant measurement instruments will be compiled and assessed as per the COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) criteria, to allow recommendations to be made on how to measure agreed data points. Phase 4 will monitor and promote the use of eventual recommendations., Conclusions: RECODE-DCM sets out to establish for the first time an index term, minimum dataset, and research priorities together. Our aim is to reduce waste of health care resources in the future by using patient priorities to inform the scope of future DCM research activities. The consistent use of a standard dataset in DCM clinical studies, audit, and clinical surveillance will facilitate pooled analysis of future data and, ultimately, a deeper understanding of DCM., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.