{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T20:45:03Z","timestamp":1785876303543,"version":"3.56.0"},"reference-count":31,"publisher":"JMIR Publications Inc.","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Res Protoc"],"abstract":"Abstract<\/jats:title>\n \n Background<\/jats:title>\n Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a rapidly progressive neurological condition that requires complex multidisciplinary care. Within the United Kingdom, specialist centers provide expert interventions, while day-to-day support often relies on local nonspecialist community health and social care professionals. This is due to the distance between people\u2019s homes and specialist centers, as well as the availability of specialist health and social care professionals. This can lead to fragmented communication and emotional, physical, and financial burdens, and it can be time-consuming for people living with MND, their carers, and the health care professionals involved in their care. Despite the recognized need for better care coordination, it remains inadequate in practice, with a current lack of specific evidence-based interventions for achieving this.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n The MND Together project aims to address these systemic gaps by (1) developing a national picture of care coordination in England and Wales, (2) identifying barriers and facilitators to coordination within specialist and nonspecialist settings, and (3) co-designing a practical care coordination tool with key stakeholders.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n This protocol outlines the co-design of an intervention underpinned by the Behavior Change Wheel and the Socioecological Model. First, a mixed methods, multicenter study will be conducted to develop a national picture, comprising focus groups with people living with MND, carers, and health and social care professionals. Second, focused ethnography will be conducted in 5 MND specialist centers and their catchment areas, involving 25 people living with MND, to explore the barriers and facilitators to coordination in practice. Finally, a series of co-design workshops will be conducted to identify key priorities for care coordination and to develop a new intervention, the MND Together tool.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n The project started in September 2025 and will run until October 2027. Workstream 1 started in December 2025, with recruitment beginning at the first site in February 2026. To date, we have recruited 23 people living with MND and carers as well as 16 health and social care professionals across 4 of the 9 sites. Workstream 1 will end in August 2026, with results published at the end of 2026. Workstream 2 began in May 2026 and will run until February 2027, with results published in the summer of 2027. Workstream 3 will begin in March 2027 and conclude with the co-design intervention developed by late 2027. This will then be piloted in practice.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n By combining several methodologies with meaningful patient and public involvement and engagement, MND Together seeks to bridge the gap between specialist and community-based services. The MND Together tool aims to improve the quality of care and ensure that expert MND support is accessible as close as possible to every patient\u2019s home.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/96327","type":"journal-article","created":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T19:52:33Z","timestamp":1785873153000},"page":"e96327-e96327","source":"Crossref","is-referenced-by-count":0,"title":["Co-Designing a Care Coordination Intervention for People With Motor Neuron Disease: Protocol for a Mixed Methods Study"],"prefix":"10.2196","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1216-0867","authenticated-orcid":false,"given":"Bryony","family":"Waters-Harvey","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2714-8035","authenticated-orcid":false,"given":"Kathleen","family":"Kane","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9388-9168","authenticated-orcid":false,"given":"Alys Wyn","family":"Griffiths","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1859-6036","authenticated-orcid":false,"given":"Grahame","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8003-6833","authenticated-orcid":false,"given":"Clare M","family":"Bartlett","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4163-0220","authenticated-orcid":false,"given":"Lise","family":"Sproson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5839-6771","authenticated-orcid":false,"given":"Sandra","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-4971-0775","authenticated-orcid":false,"given":"Jennie","family":"Starkey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-9620-6325","authenticated-orcid":false,"given":"Amy","family":"Clift","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3535-7822","authenticated-orcid":false,"given":"Theocharis","family":"Stavroulakis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8497-2338","authenticated-orcid":false,"given":"Esther","family":"Hobson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4217-3941","authenticated-orcid":false,"given":"Emily","family":"Mayberry","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4033-506X","authenticated-orcid":false,"given":"Alicia","family":"O'Cathain","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-8936-2677","authenticated-orcid":false,"given":"Caroline","family":"Bidder","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-9896-5379","authenticated-orcid":false,"given":"Katherine","family":"Kennedy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-2186-3392","authenticated-orcid":false,"given":"Jane","family":"Gibson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1269-9053","authenticated-orcid":false,"given":"Christopher","family":"McDermott","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2545-1046","authenticated-orcid":false,"given":"Liam","family":"Knox","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2026,8,4]]},"reference":[{"issue":"4","key":"R1","doi-asserted-by":"publisher","first-page":"368","DOI":"10.1177\/0269216311410900","article-title":"Experiences of dying, death and bereavement in motor neurone disease: a qualitative study","volume":"26","author":"Whitehead","journal-title":"Palliat Med"},{"issue":"3-4","key":"R2","doi-asserted-by":"publisher","first-page":"264","DOI":"10.1080\/21678421.2019.1587629","article-title":"Predicting the future of ALS: the impact of demographic change and potential new treatments on the prevalence of ALS in the United Kingdom, 2020-2116","volume":"20","author":"Gowland","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"key":"R3","doi-asserted-by":"publisher","DOI":"10.1016\/bs.irn.2024.04.004","article-title":"Advances in symptom management and in monitoring disease progression in motor neuron disease","volume":"176","author":"Hobson","journal-title":"Int Rev Neurobiol"},{"issue":"7","key":"R4","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0319628","article-title":"An evaluation of the United Kingdom Motor Neuron Disease nurses and allied health professionals (UK MND NAHP) workforce: a census","volume":"20","author":"Chau","journal-title":"PLoS ONE"},{"issue":"5","key":"R5","doi-asserted-by":"publisher","first-page":"649","DOI":"10.1097\/WCO.0000000000000862","article-title":"Cognitive and behavioural impairment in amyotrophic lateral sclerosis","volume":"33","author":"Pender","journal-title":"Curr Opin Neurol"},{"issue":"9","key":"R6","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1038\/nrneurol.2016.111","article-title":"Supportive and symptomatic management of amyotrophic lateral sclerosis","volume":"12","author":"Hobson","journal-title":"Nat Rev Neurol"},{"key":"R7","unstructured":"Motor neurone disease: assessment and management. National Institute for Health and Care Excellence; 2019. URL: https:\/\/www.nice.org.uk\/guidance\/ng42\/resources\/motor-neurone-disease-assessment-and-management-pdf-1837449470149 [Accessed 09-07-2026]"},{"issue":"1","key":"R8","doi-asserted-by":"publisher","first-page":"13","DOI":"10.3109\/17482968.2012.690419","article-title":"The natural history of motor neuron disease: assessing the impact of specialist care","volume":"14","author":"Aridegbe","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"6","key":"R9","doi-asserted-by":"publisher","DOI":"10.1111\/ene.16264","article-title":"European Academy of Neurology (EAN) guideline on the management of amyotrophic lateral sclerosis in collaboration with European Reference Network for Neuromuscular Diseases (ERN EURO-NMD)","volume":"31","author":"Van Damme","journal-title":"Eur J Neurol"},{"issue":"1-2","key":"R10","doi-asserted-by":"publisher","first-page":"58","DOI":"10.3109\/21678421.2014.957322","article-title":"Health and social care costs of managing amyotrophic lateral sclerosis (ALS): an Irish perspective","volume":"16","author":"Connolly","journal-title":"Amyotroph Lateral Scler Frontotemporal Degener"},{"issue":"1","key":"R11","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-020-01664-6","article-title":"How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study","volume":"16","author":"Simpson","journal-title":"Orphanet J Rare Dis"},{"issue":"2","key":"R12","doi-asserted-by":"publisher","first-page":"221","DOI":"10.1177\/02692163241291745","article-title":"Working with people living with motor neurone disease and the impact on professionals\u2019 emotional and psychological well-being: a scoping review","volume":"39","author":"Walls","journal-title":"Palliat Med"},{"issue":"4","key":"R13","doi-asserted-by":"publisher","first-page":"188","DOI":"10.12968\/bjcn.2022.27.4.188","article-title":"Perceptions of people with motor neurone disease, families and HSCPs: a literature review","volume":"27","author":"Brewah","journal-title":"Br J Community Nurs"},{"issue":"2","key":"R14","doi-asserted-by":"publisher","first-page":"00388","DOI":"10.1183\/23120541.00388-2022","article-title":"Delivery of noninvasive ventilation to people living with motor neuron disease in the UK","volume":"9","author":"Musson","journal-title":"ERJ Open Res"},{"issue":"2","key":"R15","doi-asserted-by":"publisher","first-page":"142","DOI":"10.1136\/bmjspcare-2020-002719","article-title":"Hospice care access inequalities: a systematic review and narrative synthesis","volume":"12","author":"Tobin","journal-title":"BMJ Support Palliat Care"},{"key":"R16","unstructured":"Fit for the future: 10-year health plan for england (executive summary). Department of Health and Social Care (UK Government); 2025. URL: https:\/\/www.gov.uk\/government\/publications\/10-year-health-plan-for-england-fit-for-the-future\/fit-for-the-future-10-year-health-plan-for-england-executive-summary [Accessed 09-07-2026]"},{"issue":"9","key":"R17","doi-asserted-by":"publisher","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: a synthesis of recommendations","volume":"89","author":"O\u2019Brien","journal-title":"Acad Med"},{"issue":"1","key":"R18","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-017-0062-2","article-title":"GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research","volume":"3","author":"Staniszewska","journal-title":"Res Involv Engagem"},{"key":"R19","doi-asserted-by":"crossref","unstructured":"Fisher E Ali Y Ryan G et al. Telehealth in MND-research: an online platform enabling research participation for people living with motor neuron disease in the United Kingdom. JMIR Preprints. Preprint posted online on Jan 14, 2026. [doi: 10.2196\/preprints.90949]","DOI":"10.2196\/preprints.90949"},{"issue":"4","key":"R20","doi-asserted-by":"publisher","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","article-title":"Reflecting on reflexive thematic analysis","volume":"11","author":"Braun","journal-title":"Qual Res Sport Exerc Health"},{"key":"R21","doi-asserted-by":"publisher","DOI":"10.1186\/1748-5908-6-42","article-title":"The behaviour change wheel: a new method for characterising and designing behaviour change interventions","volume":"6","author":"Michie","journal-title":"Implement Sci"},{"issue":"7","key":"R22","doi-asserted-by":"publisher","first-page":"513","DOI":"10.1037\/0003-066X.32.7.513","article-title":"Toward an experimental ecology of human development","volume":"32","author":"Bronfenbrenner","journal-title":"Am Psychol"},{"issue":"4","key":"R23","doi-asserted-by":"publisher","first-page":"296","DOI":"10.1111\/medu.14045","article-title":"Focused ethnography as an approach in medical education research","volume":"54","author":"Andreassen","journal-title":"Med Educ"},{"key":"R24","doi-asserted-by":"crossref","unstructured":"Fetterman DM . Ethnography: Step-by-Step. SAGE Publications; 2020. [doi: 10.4135\/9781071909874]","DOI":"10.4135\/9781071909874"},{"issue":"9","key":"R25","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2025-106459","article-title":"Workshops as a qualitative research method in health research","volume":"15","author":"O\u2019Cathain","journal-title":"BMJ Open"},{"key":"R26","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.n2061","article-title":"A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance","volume":"374","author":"Skivington","journal-title":"BMJ"},{"issue":"1","key":"R27","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1186\/s13012-017-0696-3","article-title":"Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge","volume":"12","author":"Jull","journal-title":"Implementation Sci"},{"issue":"3","key":"R28","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1136\/medhum-2017-011398","article-title":"The Participatory Zeitgeist: an explanatory theoretical model of change in an era of coproduction and codesign in healthcare improvement","volume":"45","author":"Palmer","journal-title":"Med Humanit"},{"key":"R29","doi-asserted-by":"crossref","unstructured":"Campos-Mu\u00f1iz D Yao Y Ng T et al. Design for care-full inclusion: foregrounding the voices of vulnerable communities through vignettes in co-design. Presented at: DRS2026; Jun 8-12, 2026; Edinburgh, United Kingdom. [doi: 10.21606\/drs.2026.1851]","DOI":"10.21606\/drs.2026.1851"},{"key":"R30","unstructured":"Michie S Atkins L West R . The Behaviour Change Wheel: A Guide to Designing Interventions. Silverback publishing; 2014:1003-1010. ISBN: 978-1-912141-04-3"},{"issue":"1","key":"R31","doi-asserted-by":"publisher","DOI":"10.1186\/s12961-021-00790-2","article-title":"Fit for purpose. Co-production of complex behavioural interventions. A practical guide and exemplar of co-producing a telehealth-delivered exercise intervention for people with stroke","volume":"20","author":"Ramage","journal-title":"Health Res Policy Syst"}],"container-title":["JMIR Research Protocols"],"original-title":[],"language":"en","deposited":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T19:52:36Z","timestamp":1785873156000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.researchprotocols.org\/2026\/1\/e96327"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,4]]},"references-count":31,"URL":"https:\/\/doi.org\/10.2196\/96327","relation":{},"ISSN":["1929-0748"],"issn-type":[{"value":"1929-0748","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,4]]},"article-number":"v15i4e96327"}}