Publications
14 results found
O'Driscoll F, Sung B, Gregory A, et al., 2024, Identifying barriers to outpatient appointment attendance in patient groups at risk of inequity. A mixed methods study in a London NHS Trust., BMC Health Services Research, ISSN: 1472-6963
Fusari G, Gibbs E, Hoskin L, et al., 2022, What is the feasibility and patient acceptability of a digital system for arm and hand rehabilitation after stroke? A mixed methods, single-arm feasibility study of the ‘OnTrack’ intervention for hospital and home use, BMJ Open, Vol: 12, Pages: 1-12, ISSN: 2044-6055
Objectives:Arm weakness is common after stroke; repetitive activity is critical for recovery but people struggle with knowing what to do, volume, and monitoring progress. We studied the feasibility and acceptability ofOnTrack, a digital intervention supporting arm and hand rehabilitation in acute and home settings.Design:A mixed method, single-arm study evaluating the feasibility of OnTrack for hospital and home use. An independent process evaluation assessed the intervention’s fidelity, dose and reach. Amendments to the protocol were necessary after Covid-19.Setting:Acute stroke services and home settings in North West London.Participants:12 adults with a stroke diagnosis <6 months previously (first or recurrent) requiring arm rehabilitation in hospital and/or home.Intervention:12 weeks using the OnTrack system comprising arm tracking and coaching support for self-management.Primary and secondary outcome measures:Recruitment, retention and completion rates; compliance and adherence to the intervention; reasons for study decline/withdrawal.Intervention fidelity and acceptability, evaluated through an independent process evaluation.Patient measures including activity baseline, healthcare activation, arm function & impairment collected at baseline, week 7 and week 14 of participation to assess suitability for a RCT.Results:181 individuals screened, 37 met eligibility criteria, 24 recruited (65%); of these, 15 (63%) were recruited before Covid-19, and 9 (37%) during. 12 completed the intervention (50%). Despite Covid-19 disruptions,recruitment, retention and completion were in line with pre-study expectations and acceptable for a definitive trial. Participants felt the study requirements were acceptable and the intervention usable.Fidelity of delivery was acceptable according to predetermined fidelity markers. Outcome measures collected helped determine sample size estimates and primary outcomes for an RCT.Conclusions:The intervention was found to be usabl
Rodrigues D, Kreif N, Lawrence-Jones A, et al., 2022, Reflection on modern methods: constructing directed acyclic graphs (DAGs) with domain experts for health services research, International Journal of Epidemiology, Vol: 51, ISSN: 0300-5771
Directed acyclic graphs (DAGs) are a useful tool to represent, in a graphical format, researchers’ assumptions about the causal structure among variables while providing a rationale for the choice of confounding variables to adjust for. With origins in the field of probabilistic graphical modelling, DAGs are yet to be widely adopted in applied health research, where causal assumptions are frequently made for the purpose of evaluating health services initiatives. In this context, there is still limited practical guidance on how to construct and use DAGs. Some progress has recently been made in terms of building DAGs based on studies from the literature, but an area that has received less attention is how to create DAGs from information provided by domain experts, an approach of particular importance when there is limited published information about the intervention under study. This approach offers the opportunity for findings to be more robust and relevant to patients, carers and the public, and more likely to inform policy and clinical practice. This article draws lessons from a stakeholder workshop involving patients, health care professionals, researchers, commissioners and representatives from industry, whose objective was to draw DAGs for a complex intervention—online consultation, i.e. written exchange between the patient and health care professional using an online system—in the context of the English National Health Service. We provide some initial, practical guidance to those interested in engaging with domain experts to develop DAGs.
Garfield S, Begum A, Toh KL, et al., 2022, Do patients and family carers have different concerns about the use of medicines compared with healthcare professionals? A quantitative secondary analysis of healthcare concerns relating to adults with complex needs, PATIENT EDUCATION AND COUNSELING, Vol: 105, Pages: 447-451, ISSN: 0738-3991
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Dewa L, Lawrence-Jones A, Kalorkoti C, et al., 2021, Reflections, impact and recommendations of a co-produced qualitative study with young people who have experience of mental health difficulties, Health Expectations, Vol: 24, Pages: 134-146, ISSN: 1369-6513
BackgroundThere is limited evidence of genuine equal partnership where power is shared with young people with mental health difficulties throughout all research stages, particularly in data collection and analysis.ObjectiveTo describe how our qualitative study, exploring young peoples’ perceptions on the feasibility of using technology to detect mental health deterioration, was co-produced using principles of co-production, whilst reflecting on impact, challenges and recommendations.MethodsYoung people with experience of mental health difficulties were appointed and then worked with researchers throughout all research stages. The study was evaluated against the five principles of co-production. Reflections from researchers and young people were collected throughout.ResultsSeven young people formed an initial Young People's Advisory Group (YPAG); three became co-researchers. Reflection was key throughout the process. Sharing power became easier and more evident as trust, confidence and mutual respect grew over time, particularly after a safe space was established. The safe space was crucial for open discussions, and our WhatsApp group enabled continual communication, support and shared decision-making. The resulting co-produced topic guide, coding framework, thematic map, papers and presentations demonstrated significant impact.ConclusionsTo our knowledge, this is the first qualitative mental health study to be co-produced using the principles of co-production. Our rigorous assessment can be utilized as an informative document to help others to produce meaningful co-produced future research. Although co-production takes time, it makes significant impact to the research, researchers and co-researchers. Flexible funding for spontaneous suggestions from co-researchers and more time for interview training is recommended.
Olivia L, Roberts L, Jonathan R G, et al., 2021, “Opening a Can of Worms” - exploring public hopes and fears on healthcare data sharing: qualitative study, Journal of Medical Internet Research, Vol: 23, ISSN: 1438-8871
Background: Evidence suggests that health care data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, to achieve efficient and meaningful adoption of health care data-sharing initiatives, it is necessary to engage all stakeholders, from health care professionals to patients. Although previous work has assessed health care professionals’ perceptions of data sharing, perspectives of the general public and particularly of seldom heard groups have yet to be fully assessed.Objective: This study aims to explore the views of the public, particularly their hopes and concerns, around health care data sharing.Methods: An original, immersive public engagement interactive experience was developed—The Can of Worms installation—in which participants were prompted to reflect about data sharing through listening to individual stories around health care data sharing. A multidisciplinary team with expertise in research, public involvement, and human-centered design developed this concept. The installation took place in three separate events between November 2018 and November 2019. A combination of convenience and snowball sampling was used in this study. Participants were asked to fill self-administered feedback cards and to describe their hopes and fears about the meaningful use of data in health care. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results: Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement, and human-centered design to tell stories, collect perspectives, and spark conversations around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ hopes and fears for health care data sharing. Thematic analyses identified six themes under hopes: enablement
Dewa L, Crandell C, Choong E, et al., 2021, CCopeY: a mixed-methods co-produced study on the mental health status and coping strategies of young people during COVID-19 UK lockdown, Journal of Adolescent Health, ISSN: 1054-139X
PurposeExploring the impact of COVID-19 pandemic on young people’s mental health is an increasing priority. Studies to date are largely surveys and lack meaningful involvement from service users in their design, planning and delivery. The study aimed to examine the mental health status and coping strategies of young people during the first UK COVID-19 lockdown using co-production methodology.MethodsThe mental health status of young people (aged 16-24) in April 2020 was established utilising a sequential explanatory co-produced mixed methods design. Factors associated with poor mental health status including coping strategies were also examined using an online survey and semi-structured interviews.Results30.3% had poor mental health and 10.8% had self-harmed since lockdown. Young people identifying as Black/Black-British ethnicity had the highest increased odds of experiencing poor mental health (odds ratio [OR] 3.688, 95% CI 0.54-25.40). Behavioural disengagement (OR 1.462, 95% CI 1.22-1.76), self-blame (OR 1.307 95% CI 1.10-1.55), and substance use (OR 1.211 95% CI 1.02-1.44) coping strategies, negative affect (OR 1.109, 95% CI 1.07-1.15), sleep problems (OR 0.915 95% CI 0.88-0.95) and conscientiousness personality trait (OR 0.819 95% CI 0.69-0.98) were significantly associated with poor mental health. Three qualitative themes were identified: (1) pre-existing/developed helpful coping strategies employed, (2) mental health difficulties worsened and (3) mental health and non-mental health support needed during and after lockdown.ConclusionPoor mental health is associated with dysfunctional coping strategies. Innovative coping strategies can help other young people cope during and after lockdowns, with digital and school promotion and application.
Neves AL, Lawrence-Jones A, Naar L, et al., 2020, Multidisciplinary teams must work together to co-develop inclusive digital primary care for older people, British Journal of General Practice, Vol: 70, Pages: 582-582, ISSN: 0960-1643
Dewa L, Lawrence-Jones A, Kalorkoti C, et al., 2020, Reflections and impact of a co-produced qualitative study with young people with experience of mental health difficulties, Publisher: Health Expectations
Dewa L, Crandell C, Choong E, et al., 2020, CCopeY: a mixed-methods co-produced study on the mental health status and coping strategies of young people during COVID-19 UK lockdown
Atchison C, Pristerà P, Cooper E, et al., 2020, Usability and acceptability of home-based self-testing for Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) antibodies for population surveillance, Clinical Infectious Diseases, Vol: 2020, Pages: 1-10, ISSN: 1058-4838
BACKGROUND: This study assesses acceptability and usability of home-based self-testing for SARS-CoV-2 antibodies using lateral flow immunoassays (LFIA). METHODS: We carried out public involvement and pilot testing in 315 volunteers to improve usability. Feedback was obtained through online discussions, questionnaires, observations and interviews of people who tried the test at home. This informed the design of a nationally representative survey of adults in England using two LFIAs (LFIA1 and LFIA2) which were sent to 10,600 and 3,800 participants, respectively, who provided further feedback. RESULTS: Public involvement and pilot testing showed high levels of acceptability, but limitations with the usability of kits. Most people reported completing the test; however, they identified difficulties with practical aspects of the kit, particularly the lancet and pipette, a need for clearer instructions and more guidance on interpretation of results. In the national study, 99.3% (8,693/8,754) of LFIA1 and 98.4% (2,911/2,957) of LFIA2 respondents attempted the test and 97.5% and 97.8% of respondents completed it, respectively. Most found the instructions easy to understand, but some reported difficulties using the pipette (LFIA1: 17.7%) and applying the blood drop to the cassette (LFIA2: 31.3%). Most respondents obtained a valid result (LFIA1: 91.5%; LFIA2: 94.4%). Overall there was substantial concordance between participant and clinician interpreted results (kappa: LFIA1 0.72; LFIA2 0.89). CONCLUSION: Impactful public involvement is feasible in a rapid response setting. Home self-testing with LFIAs can be used with a high degree of acceptability and usability by adults, making them a good option for use in seroprevalence surveys.
Lounsbury O, Roberts L, Goodman JR, et al., 2020, “Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study., Publisher: Journal of Medical Internet Research
Background:Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed.Objective:This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing.Methods:An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results:Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) ena
Dewa L, Lawrence-Jones A, 2020, Reflecting on our co-produced study with young people with past mental health difficulties
Lisa F, Neves AL, Flott K, et al., 2018, Patients’ Ability to Review Electronic Health Record Information to Identify Potential Errors: A Pilot Qualitative Study
Background:Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed.Objective:This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing.Methods:An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes.Results:Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) ena
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