Suchergebnisse

ObjectivesPublic engagement in cohort studies is instrumental to recruitment and retention. However, instead of framing engagement as a means to an end, we advocate for an end in itself approach that attempts to meaningfully share the shaping of the narrative of the cohort with its members.
ApproachThrough an annual postal newsletter, we recruited five cohort members to lead the creation of a digital exhibition about the Aberdeen Children of the 1950s cohort. Our co-curators worked with us and a museum curator to design a narrative-driven overview of the cohort and its members' lives. Additionally, we sent out a questionnaire (by email) asking cohort members about future research directions (n = 741) including a question: "Are there any other aspects of life during the pandemic that you think should be researched?". Both activities aimed to contribute qualitative textual material to be drawn upon in this largely quantitative study.
ResultsThe digital exhibition was unexpectedly well received, becoming the most visited in the university's collection. Co-curators emphasized the socio-historical embeddedness of the cohort, sharing experiences of growing up in times of Aberdeen's booming oil economy. We garnered media attention in newspaper articles and interest from TV producers. Research enabled by the cohort featured in two documentaries, with two cohort members appearing in one.
The questionnaire yielded a response rate of 61%, with just under half providing answers to the open-ended question. Participants found mental health to be of the highest priority to research, contextualizing their rationales in free-text answers (27 mentions). Some of the most common themes included: comparisons with the typhoid epidemic in Aberdeen in the 1960s (9 mentions), and financial struggles (9 mentions).
ConclusionPublic engagement as an end-in-itself social practice is a powerful way to give agency to research participants. Qualitative contextual material can help researchers to ground their quantitative analyses in historical contexts housing populations which may be essential for interpretation and translation of findings to meaningful policies.

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by NHS Grampian, Public Health Directorate. This work was also supported by Health Data Research UK which receives its funding from HDR UK Ltd (HDR-5012) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF) and the Wellcome Trust. Data accessibility statement De-identified data used for this study are held by Grampian Data Safe Haven. These data are available provided the necessary permissions have been obtained. Further information is available at http://www.abdn.ac.uk/iahs/facilities/grampian-data-safe-haven. php and requests for data may be made to Professor Corri Black on behalf of Grampian Data Safe Haven, corri.black@abdn.ac.uk. ; Peer reviewed ; Publisher PDF

IntroductionMultimorbidity is a complex and growing health challenge. There is no accepted "gold standard" multimorbidity measure for hospital resource planning, and few studies have compared measures in hospitalised patients.
AimTo evaluate operationalisation of two multimorbidity measures in routine hospital episode data in NHS Grampian, Scotland.
MethodsLinked hospital episode data (Scottish Morbidity Record (SMR)) for the years 2009-2016 were used. Adults admitted to hospital as a general/acute inpatient during 2014 were included. Conditions (ICD-10) were identified from general/acute (SMR01) and psychiatric (SMR04) admissions during the five years prior to first admission in 2014. Two count-based multimorbidity measures were used (Charlson Comorbidity Index and Tonelli et al.), and multimorbidity was defined as ≥2 conditions. Kappa statistics assessed agreement. The association between multimorbidity and length of stay, readmission and mortality was assessed using logistic and negative binomial regression as appropriate.
ResultsIn 41,545 adults (median age 62 years, 52.6% female), multimorbidity prevalence was 15.1% (95% CI 14.8%, 15.5%) using Charlson and 27.4% (27.0%, 27.8%) using Tonelli – agreement 85.1% (Kappa 0.57). Multimorbidity prevalence, using both measures, increased with age. Multimorbidity was higher in males (16.5%) than females (13.9%) using the Charlson measure, but similar across genders when measured with Tonelli. After adjusting for covariates, multimorbidity remained associated with longer length of stay (Charlson IRR 1.1 (1.0, 1.2); Tonelli IRR 1.1 (1.0, 1.2)) and readmission (Charlson OR 2.1 (1.9, 2.2); Tonelli OR 2.1 (2.0, 2.2)). Multimorbidity had a stronger association with mortality when measured using Charlson (OR 2.7 (2.5, 2.9)), than using Tonelli (OR (1.8 (1.7, 2.0)).
ConclusionsMultimorbidity measures operationalised in hospital episode data identified those at risk of poor outcomes and such operationalised tools will be useful for future multimorbidity research and use in secondary care data systems. Multimorbidity measures are not interchangeable, and the choice of measure should depend on the purpose.
Hightlights

Operationalisation of two count-based multimorbidity measures using linked electronic hospitalepisode data was evaluated (Charlson and Tonelli).
First study to compare the Tonelli measure with another measure for investigating multimor-bidity in hospitalised patients.
Multimorbidity prevalence differed depending on measure used, but both multimorbidity mea-sures identified those at risk of poor outcomes.
Operationalised multimorbidity tools have uses for future multimorbidity research and use insecondary care data systems.
Multimorbidity measures are not interchangeable, and choice of measure should depend onpurpose.

Acknowledgements: This work was funded by NHS Grampian. We thank NHS Grampian who provided data and also the Grampian Data Safe Haven, who hosted the data and provided data management support and the linkage service. We acknowledge the support from The Farr Institute of Health Informatics Research, Scotland. The Farr Institute is supported by a 10-funder consortium: Arthritis Research UK, the British Heart Foundation, Cancer Research UK, the Economic and Social Research Council, the Engineering and Physical Sciences Research Council, the Medical Research Council, the National Institute of Health Research, the National Institute for Social Care and Health Research (Welsh Assembly Government), the Chief Scientist Office (Scottish Government Health Directorates), the Wellcome Trust, (MRC Grant Nos: Scotland MR/K007017/1). We also acknowledge the support of our Study Steering Committee, which included clinical, epidemiological and health intelligence representation. Funding: The study was funded by NHS Grampian, Public Health Directorate. ; Peer reviewed ; Publisher PDF

IntroductionMultimorbidity, the co-existence of two or more health conditions, is a growing challenge. It may be measured using health service administrative data via the emerging consensus measure by Barnett. However, the original Barnett was developed using Scottish-specific primary care coding, which restricts its application in other health systems.
Objectives and ApproachThe aim was to create and test International Classification of Disease (ICD) coding algorithms for all 40 Barnett conditions.
We evaluated this new measure by:

Assessing the prevalence of secondary care multimorbidity in 2001
Assessing the association between multimorbidity and mortality rate over 15 years

Participants of the Aberdeen Children of the 1950s cohort (ACONF) were linked to their secondary-care healthcare records and mortality records. Multimorbidity was defined as the presence of two or more of the 40 conditions. The association between multimorbidity and mortality was assessed using Cox proportional hazards regression with adjustment for key covariates.
ResultsWe combined results of a review of the coding literature with codes used commonly by the National Health Service in Scotland, to apply ICD codes to each Barnett condition.
The ACONF were aged 45 to 51 years in 2001. Of 8,094 members who were alive and linked to Scottish administrative data, 246 (3%) had multimorbidity. There were 629 deaths by 2016 with 83 occurring in the multimorbidity group.
Relative to those without multimorbidity, those with multimorbidity in 2001 had a mortality hazard ratio (HR) of 5.9 (95% CI 4.6-7.4) over 15 years follow-up. This was unchanged when adjusted for age, gender, social class at birth, cognition at age 7, secondary school type and educational attainment (HR 6.2, 95% CI 4.4-8.5).
Conclusion/ImplicationsWe have created a new version of the influential Barnett measure using ICD codes, which allows for its wider application across health systems. We found that this measure of multimorbidity was associated with greatly increased mortality, indicating it could help predict poor outcome using administrative records.

Funding NHS Grampian Public Health Directorate funded the original study developing the dataset. This study was funded by NHS Grampian Endowment [Grant No. 18/10]. Acknowledgements We thank NHS Grampian who provided data and also the Grampian Data Safe Haven, who hosted the data and provided data management support and the linkage service. This work was supported by Health Data Research UK which receives its funding from HDR UK Ltd (HDR-5012) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF) and the Wellcome Trust. We also acknowledge the non-financial support of our Study Steering Committee, which included clinical, epidemiological and health intelligence representation. ; Peer reviewed ; Publisher PDF

BackgroundMultimorbidity, the co-existence of two or more health conditions, is a growing challenge. It has been measured using health service administrative data via the emerging consensus measure by Barnett (containing 40 health conditions). However,this was developed using Scottish-specific primary care coding, which restricts its application in other health systems.
ObjectivesThe aim was to create International Classification of Disease (ICD) coding algorithms for all Barnett conditions, and evaluate the new measure by assessing the prevalence of multimorbidity and its association with mortality in the AberdeenChildren of the 1950s (ACONF) cohort.
MethodWe combined results of a coding literature review with codes used commonly by the Scottish National Health Service, to identify ICD codes to each condition.
Participants of the ACONF were linked to their secondary care healthcare records and mortality records. Multimorbidity was defined as the presence of two or more of the 40 conditions. The association between multimorbidity and mortalitywas assessed using Cox proportional hazards regression with adjustment for key covariates (age, gender, social class at birth, cognition at age 7, secondary school type and educational attainment).
FindingsThe ACONF were aged 45 to 51 years in 2001. Of 8,094 ACONF members linked to administrative data, 246 (3%) had multimorbidity. Relative to those without multimorbidity, those with multimorbidity had a mortality hazard ratio (HR) of 5.9 (95% CI 4.6-7.4) over 15 years follow-up. This was unchanged when adjusted for covariates (HR 6.2, 95% CI 4.4-8.5).
ConclusionWe have created a new version of the influential Barnett measure using ICD codes, which allows for its wider application across health systems. This measure of multimorbidity was associated with increased mortality, indicating it could helppredict poor outcome using administrative records.

his project is funded by the Economic and Social Research Council grant number ES/L007487/1 (Administrative Data Research Centre–Scotland). FP,RD, PC, and MHB are also funded by the Medical Research Council [MC_UU_12017/13, MC_UU_12017/15] and the Scottish Government Chief Scientist Office [SPHSU13, SPHSU15] ; Peer reviewed ; Publisher PDF

IntroductionWe now have the opportunity to disentangle the complexities of lifespan brain health through linking rich birth cohorts data to novel information utilizing health informatics techniques. Wellcome Trust evidenced that efforts to manage and link digital health data require exploring the attitudes of public and data guardians towards this initiative.
Objectives and ApproachOur teams in Aberdeen, Mysore and Mumbai have established general population cohorts that have provided evidence on the early-life origins of later-life diseases. In 2016, we engaged with the participants of the Aberdeen Children of the 1950s (62-68,N~8,400) in an event attended by 350 study members. We are also engaging with members and data guardians of Mysore Parthenon Cohort (20-21y,N~500), Mysore Birth Records Cohort (51-83y,N~750), and Mumbai Maternal Nutrition Cohort (5-11y,N~1,600). This qualitative project utilises focus groups and individual interviews. The goal is to understand their attitudes and perceived public benefits towards future novel data collection, data platforms and biorepositories.
ResultsThe ACONF event attendees were very willing to volunteer for further studies. The highest support was for 'provide a blood sample' (92%) and the lowest for 'take an online survey' (83%). They were satisfied with data governance but had incomplete understanding of linkage possibilities with their data. Through the ongoing activities in Mysore and in Mumbai, we aim to achieve the following: 1) Develop awareness of health informatics through public engagement with participants and researchers; 2) Explore attitudes and potential barriers to creation of secure data linkage between imaging, laboratory, health data and outcomes to facilitate future linkage studies; 3) Understand what is required for interoperable, secure data storage and plan future biorepository as a resource for researchers that will build over time in India.
Conclusion/ImplicationsThe proposed activities will inform preparation of a large scale grant to investigate the hypothesis that early life environment affects future risk of mental illness and cognitive ability globally. They will also begin to create a platform of enduring value for future cross-cultural population research.

Purpose: The most common form of social work (SW) practice in Canada is clinical which requires specialized knowledge and advanced clinical skills. The SW profession is more than 100 years old, but regulation is new to Canada and presently most jurisdictions have regulatory bodies to advance safe, competent, and ethical practices. Regulatory bodies establish admission requirements, standards of practice, ethical guidelines, supervision, continuing education requirements, and measures for complaints and discipline. Methods: This article examines regulation of SW practice in Canada with a focus on registration requirements, clinical SW designation, use of controlled acts such as psychotherapy and diagnosis, supervision, continuing education, technology, private practice, and how regulatory bodies address diversity, equity, reconciliation, racism, and discrimination. Results: This critical examination of clinical SW practice found inconsistent standards across the country. Conclusions: It is important to harmonize the three pillars including education, association, and regulation to strengthen clinical SW practice in Canada.

Background The Aberdeen Children of the 1950s (ACONF) cohort contains 12,150 individuals born in Aberdeen, Scotland in the 1950s. The study includes rich early life data, information from questionnaire in middle age, and linkage to electronic healthcare records.
Involving the participants in designing future data collection and research is key to ensure research is acceptable and reflects public priorities.
Aim To gather ACONF participants' views to inform how to: define healthy ageing, optimise recruitment and maximise participation.
Method We undertook three co-design workshops with 8 to 10 ACONF members. The workshops operated as a discussion, led by a facilitator using guidance questions developed by the study team. Workshops were recorded and transcribed.
Results Healthy ageing: Participants viewed healthy ageing as keeping socially and physically active, taking responsibility for oneself and having a positive attitude to ageing. Key research priorities were: dementia, healthy living advice, improvements in the social care system and engaging hard-to-reach groups.
Optimising recruitment and participation: Participants were keen for further involvement in research. Recruitment may be maximised by: more information online, involving participants in recruitment of other study members and clarity about potential benefits to themselves or others. It is acceptable to ask their offspring to participate.
There were high levels of trust in researchers, but ongoing data protection is vital. Participation may be improved by regular contact (informing participants of results, engagement events, newsletters, mobile phone "apps").
Participants were happy with data collection methods: questionnaires, applications, wearable devices, and in-person tests. They raised no concerns regarding DNA collection and electronic record linkage.
Conclusion Participant involvement in research is a fundamental part of securing a social license for research. Participants were in favour of ongoing research, including recruitment of their children and linkage of electronic records. The workshops highlighted key considerations for future research and data collection.