CUREd: Creating a research database to improve urgent and emergency care system research
Maxine Kuczawski, Tony Stone, Suzanne Mason
University of Sheffield
Background: Urgent and emergency care (UEC) provide substantial health benefit across the world but increasing demand is leading to unsustainable pressure on services and need for health care funding. Failure of the UEC system to manage increasing demand causes substantial public concern and political impact. Delays in ambulance response or emergency department (ED) assessment can lead to worse outcomes. ED crowding is internationally recognised and may be associated with avoidable mortality. Understanding the system and how patients use it is key to developing appropriate patient-focused interventions that can lead to a sustainable, safe and cost-effective system of care. Individual provider data exists but there has been no attempt to link data across different providers in the UK to show patient flow through the whole system. This research aims to create a linked dataset which maps the use of the UEC system on a patient-level.
Methods: Approval was granted from the United Kingdom Health Research Authority and Confidential Advisory Group to obtain patient identifiable data to create a linked UEC research database. Routinely collected data was supplied from all UEC providers in one English region (population of 5.45 million people) including NHS111, ambulance service and 19 acute hospital NHS trusts (ED and inpatient admissions) for a 6 year period (2011-2017). Using patient identifiers, a data linking methodology was developed and processes established to enable researchers access to pseudonymised data extracts.
Results: Following a development period of 20 months, we successfully created CUREd, a large (>15 million patient episodes) and unique research database containing linked UEC patient-level data for the Yorkshire and Humber region. Linkage was undertaken using deterministic and probabilistic matching of patient name, address, date of birth and NHS number. CUREd allows a detailed picture of the characteristics of demand in the UEC system to be built, in order to understand how the system is used from the point of contact (such as a call to the ambulance service/NHS111) through to different parts of the system (ED and inpatient admission). This valuable resource can be accessed by researchers to support audit and research, and has already been utilised to understand UEC service use to identify avoidable use of the UEC system, of children born to Roma mothers, outcomes of care home residents, and improve outcomes for older people.
Implications: CUREd represents the largest resource of clinical and demographic data for the UEC system in the United Kingdom. In a healthcare system where individual services are not routinely linked, these data can be used to advance the understanding of how the UEC system is utilised by patients: the multiple contacts, re-attendances, re-admissions and the impact of these on patients and the health service. Building a basic understanding of utilisation can then help identify areas for potential improvement.
Health technology adoption – the usefulness of Normalisation Process Theory to inform intervention design
Carolyn McCrorie(1), Arabella Scantlebury(2), Owen Ashby Johnson(3), Ciarán McInerney(4), Jonathan Benn(3)
(1)Yorkshire & Humber Patient Safety Translational Research Centre, (2)York Trials Unit, (3)University of Leeds, (4)Yorkshire & Humber
Background: Implementation science has produced methods and strategies to promote the successful uptake of complex interventions into routine healthcare practice. Applying these strategies to the implementation of health information technologies (HIT) has met with varying success due to issues such as workforce engagement and adoption. There is a lack of robust evidence on how to promote successful uptake of HIT within health care organisations (1). Normalisation Process Theory (NPT) offers a theory of implementation that focuses on the work that individuals and groups do to integrate new ways of working into routine practice (2). It has been suggested as a means to assessing the conditions in which interventions become normalised into practice, while others do not. We have previously reported on the expectations of health care professionals for a hospital-wide EHR system (3). Using this case study, we provide an example of the utility of NPT in highlighting challenges to the adoption of HIT.
Method: The case study took place in November 2016 at a single site and comprised of 14 semi-structured interviews with a range of hospital staff. Interview data was coded iteratively. The first stage involved analysing all data thematically (inductive coding), followed by mapping emergent themes onto the four core mechanisms of NPT: Coherence (understanding of reasons for implementation and potential value of the technology), Cognitive participation (preparedness to engage and commit to use the technology), Collective action (ability to do the work to use the technology) and Reflexive monitoring (how staff appraise the technology).
Results: We found that the four core mechanisms of NPT provided a useful lens for coding and interpretation of staff perspectives on the impending EHR implementation. There was universal acceptance for the potential value of the EHR, despite variation across staff groups in perceived intended purpose (Coherence). EHR was regarded as central to delivering patient care although the extent to which participants felt prepared for use varied across different staff groups and specific care contexts (Cognitive participation). Variation in the perceived compatibility of EHR with existing work practices was additionally reported (Collective action) and although EHR was expected to improve efficiency, there were concerns that the expected standardisation of the system could lead to non-use by some services (Reflexive monitoring). Interpreting the perceived barriers and facilitators to implementation from a patient safety perspective helped us to develop a theoretically-informed and evidence-based understanding of concerns that staff had for delivering safe patient care.
Implications: The findings indicate that for successful technology adoption it is important that users understand the reasons for the initiation, are prepared for and able to use the technology and appraise use as beneficial to care. NPT is often used retrospectively to understand implementation for interventions and technologies in a health service context. This study supports a role for the prospective application of NPT to guide implementation planning, as has been suggested in the context of other forms of digital health technology interventions.
Ross, J., Stevenson, F., Dack, C., Pal, K., May, C., Michie, S., Barnard, M. and Murray, E. Developing an implementation strategy for a digital health intervention: an example in routine healthcare. BMC Health Serv Res. 2018, 18(1), p.794.
May, C.R., Johnson, M. and Finch, T. Implementation, context and complexity. Implement Sci. 2016, 11(1), p.141.
McCrorie, C., Benn, J., Johnson, O.A. and Scantlebury, A. Staff expectations for the implementation of an electronic health record system: a qualitative study using Normalisation Process Theory. BMC Med Inform Decis Mak. 2019, 19(1), p.222.
Embedding researchers into organisations: studying the features of embedded research initiatives
Liz Mear(1), Justin Waring(2), Vicky Ward(3), Naomi Fulop(4), Kate Kirk & Liz Mear(4)
(1)NWCAHSN, (2)University of Birmingham, (3)University of St Andrews, (4)
Background: ‘Embedded research’ (co-locating researchers within organisations) is increasingly advocated as a way of developing more effective services through the better creation and application of knowledge. So far the literature on such initiatives has largely been descriptive, focusing on: the principles of embedded research; descriptions of individual initiatives; and/or accounts of the experiences of embedded researchers. There has been less in the way of analysis, for example, disaggregating the components of such schemes, unpacking underpinning logics or comparing the diverse ways in which schemes are instantiated.
Methods: This study addresses this through a focused literature review combined with a systematic scoping exercise of initiatives in health settings across the UK. We identified 26 ‘clusters’ of peer-reviewed papers detailing specific embedded research initiatives and 45 such initiatives in operation in health settings across the UK. We assembled documentation on each scheme and conducted in-depth interviews in twelve of them (n=17). Analytically, we focused on surfacing and articulating the key features of embedded research initiatives in relation to their intent, structure and processes. Our findings were then tested and validated during a co-production workshop with embedded researchers and their managers.
This research is is part of a larger 'Embedded Research' study funded by the NIHR. The overarching aim of this work is to increase the influence of health services research on decisions and the improvement and redesign of NHS services, through:
Developing the evidence base underpinning the nature and effectiveness of models of knowledge mobilisation, specifically where researchers operate (or are ‘embedded’) within NHS service settings and evidence is created in partnership (or is ‘co-produced’) by researchers, practitioners and people who use services.
In addition to, developing practical guidance on the design and implementation of embedded models of knowledge co-production for managers and clinicians in the NHS, its academic partners and people who use health services.
Results: The systematic scoping exercise uncovered initiatives that were varied in intent, structure and processes but we were able to surface ten themes representing common features: intended outcomes, power dynamics, scale, involvement, proximity, belonging, functional activities, skill & expertise, relational roles, and learning & reflection. These themes can be used as a framework for guiding further systematic and evaluative enquiry on embedded research initiatives.
Implications: The results of this research have implications for those involved in the design, delivery and management of health care services including clinical staff, health service policy makers/managers, and broad academic audiences. Implications will also be of interest to those receiving care. Most crucially, this research shows:
Embedded research initiatives come in a range of different shapes and sizes
Despite this variety, initiatives share a number of common features
An understanding of these features can promote dialogue about the design and management of embedded initiatives
These features can also guide systematic and evaluative enquiry of such initiatives
Using public consultation data for qualitative research purposes– a case study of public responses to the transformation of maternity services in South-West England
Sian Smith-Lickess(1), Ellen Stewart(2), Professor Christos Vasilakas(1)
(1)University of Bath, (2)University of Edinburgh
Background: Consulting the public about plans to change NHS health services has become a key part of healthcare transformation, particularly when changes are controversial, such as the closure of services. Consultation enables relevant stakeholders to voice their concerns, and may increase the transparency of decisions, while generating a considerable amount of quantitative and qualitative data. Such data, however, are rarely utilised in research projects – especially in qualitative studies. This research focuses on a public consultation to transform NHS maternity services across South-West England (Bath & North East Somerset (B&NES), Swindon and Wiltshire), through the closure of Freestanding Midwifery Units (FMUs) (community hospitals which are on a separate site from obstetric services), and the creation of Alongside Midwifery Units (AMUs) (units within obstetric care hospitals, or on the same site in a different building).
This paper presents the qualitative results of the maternity public consultation to transform maternity services in the South-West of England. In doing so, we reflect on the potential methodological strengths, limitations and challenges of analysing and justifying the use of public consultation data for research purposes, and the lessons learnt from conducting this type of research.
Method: The public consultation survey (closed and open-ended questions) was widely circulated to service users across B&NES, Swindon, Wiltshire, and Somerset via social media (Facebook group), the local media, birthing centres, the relevant Clinical Commissioning Groups (CCGs) and community groups. It could be completed online or via written postal questionnaires. The consultation period ran from November 2018 to February 2019. Qualitative data were analysed using thematic network analysis, an approach which seeks to categorise themes at three different levels, from a micro to a macro perspective: Basic, Organising, and Global themes (Attride-Stirling 2001).
Results: A total of 1,193 respondents completed the survey, including service users (62%), maternity staff (7%), other healthcare professionals (5%), charities (2%) and unknown (24%). Most were aged between 25-44 years (63%), 75% were female, 58% were married, 55% had a University education. Three Global themes were identified in the thematic analysis: (1) perceived advantages of the proposals, (2) perceived concerns and fears, and (3) perceived implications.
Respondents valued being part of the consultation process and some recognised the need for change when services were underutilised. The transformation plans to centralise maternity services were perceived as a useful way to manage resources. The creation of AMUs were seen as the 'best of both worlds' with regard to normalising birth, providing reassurance that the obstetric unit is close by, and eliminating the fear of ambulance transferal.
At the same time, great disappointment and sadness was expressed by respondents at the prospect of FMUs closing. Such services were highly respected in the community as they enabled birth to be retained across family inter-generations. The postnatal beds were described as a 'lifesaver' as they provided a place for women to heal emotionally and physically after birth. Many felt the closure of the postnatal beds would have adverse implications during the postpartum period, particularly for breastfeeding support and mental health.
Implications: This research contributes to our understanding of the complexity of public perspectives on service change, and the meaningful role that local services play in communities. Given the nature of the public consultation data, there was limited control over the recruitment strategy and data collection (e.g. unable to probe respondents in their answers). Despite this, respondents gave detailed responses of their experiences of using maternity services and what the proposed changes meant to them. Given widespread pressures for secondary use of existing data, the potential for using public consultation data for academic purposes is an important topic for further discussion.
Rapid prioritisation of adult social care innovations for evaluation: Reflections and considerations
Holly Walton(1), Katherine Cowan(2), Amelia Harshfield(3), Pei Li Ng(1), Antiopi Ntouva(4), Manbinder Sidhu(4), Sonila M. Tomini(1), Jon Sussex(3), Naomi Fulop(1)
(1)University College London, (2)Katherine Cowan Consulting Limited, (3)RAND Europe, (4)University of Birmingham
Background: There are many innovations in adult social care and social work currently under way across the United Kingdom. Evaluations of many of these are not yet available to guide decisions about wider implementation. In July 2019, the National Institute for Health Research Health Services and Delivery Research team asked its two rapid evaluation centres to conduct a rapid horizon scanning and prioritisation process to identify a shortlist of innovations for adult social care and social work for evaluation. This conference presentation will describe the methods and findings from a rapid process of prioritisation (conducted between July and November 2019) for adult social care innovations. In addition, it will reflect on both the strengths and the challenges associated with such rapid methodology.
Method: To identify adult social care innovations, we developed and implemented an adapted version of the James Lind Alliance method for priority setting. We followed four steps: 1) Identification of a ‘long list’ of innovations, 2) Development of criteria for shortlisting, 3) Grouping and sifting of innovations and 4) Prioritisation of innovations in a stakeholder workshop setting. The workshop enabled prioritisation to include a full range of perspectives, including from adults who use social care services, carers, practitioners, providers, commissioners, researchers and key national organisations.
Results: One hundred and fifty-eight innovations were suggested by 59 individuals from 43 organisations. Twenty of the innovations were included in the final shortlist. Twenty-three participants attended the prioritisation workshop. They included people who use adult social care services, practitioners, academics/researchers, commissioners, policy makers and carers. The top five priorities agreed during the workshop included a range of innovations for a variety of target groups. The target groups included: older adults, people living with dementia, people living with mental health conditions and the prison population. The top five innovations ranged from community innovations to digital technologies. Key themes and principles that informed decision-making for prioritisation included: ensuring a mix of different types of innovations to be evaluated, sources of funding for the innovation, the innovation’s target user group, potential for impact, the role of personal experience, prioritisation of similar innovations, ‘innovativeness’ of innovation, extent of evidence/research already available or known to be in progress, and the language used in innovations. Advantages of this approach included timeliness and relevance. Yet given the short period of time available for this horizon scanning, some innovations may have been missed from the shortlist, or may have already been or are currently being evaluated.
Implications: The approach was successful in rapidly identifying a large number of innovations and prioritising the top five adult social care and social work innovations for evaluation. Two of these innovations have been taken forward for evaluation by the two rapid evaluation teams. Additionally, there is scope for the list of innovations identified and prioritised through this work to inform the development of further adult social care and social work evaluations in the future. Findings also provide insight into strengths and weaknesses of a rapid prioritisation process and the factors that might influence decision-making in such rapid prioritisation processes.
The importance of diverse search methods for a rapid review of evidence on the distance to emergency care facilities
Anna Cantrell, Andrew Booth, Duncan Chambers
School of Health and Related Research (ScHARR), University of Sheffield
Background: The Health Services and Delivery Research (HS&DR) Sheffield Evidence Synthesis Centre produces reviews for the National Institute for Health Research HS&DR Programme that identify, evaluate and summarise the available research and highlight the implications for NHS decision-makers and priorities for further research. We recently conducted a review of evidence for the impact of increased distance to urgent and emergency care facilities. The review methods included an initial scoping search to inform the protocol, an extensive search of seven databases, citation searching and reference checking. One legitimate response to the time constraints of rapid reviews is to reduce the number of databases searched thereby reducing the number of references to screen. Additionally, many database index the same journals, requiring time spent deduplicating the search results. This study aims to examine this rapid review case study to discover which search methods and databases were needed to retrieve all references included in the review.
Method: The review searched 7 databases, Medline, Embase, Cumulative Index to Nursing and Allied Helath Literature (CINAHL), the Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trials, WOS and Health Management Information Consortium (HMIC) in February 2019. Additionally, reference checking was completed for all included studies and citation searching for included reconfiguration studies was undertaken. Citation searching was undertaken on Web of Science and Google Scholar. After the review the Information Specialist ascertained how each of the included studies was retrieved.
Results: The review included 44 studies, 12 were reconfiguration studies. Analysis of the source of included studies found that 31 studies were retrieved from the multiple database search, 23 of these were unique to the multiple database search. Reference checking identified 6 new included studies. Citation searches identified 6 of the included studies, with 3 being uniquely retrieved by this search method. The initial scoping search retrieved 9 included studies with one not retrieved by any of the other search methods. Additionally, while some of the included studies were retrieved from more than one database, each database contributed at least one unique included reference. The number of databases that retrieved the studies ranged from 1-4 with the mode being 2. Each of the 7 databases retrieved 1 or more unique references indicating the importance of searching multiple diverse databases.
This analysis clearly demonstrates the value of using diverse search methods when identifying studies for reviews of health services delivery research.
Implications: As illustrated by this review all the diverse search methods were required to identify all of the included studies. Each individual database made a unique contribution, illustrating the ongoing need to search diverse databases while balancing this against the time constraints of the rapid review process.
Disclaimer: This abstract presents independent research funded by the NIHR HS&DR programme under project number 16/47/17. The views and opinions expressed are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health.
 Chambers, D., Cantrell, A., Baxter, S., Turner, J., & Booth, A. (n.d.). The effects of increased distance to urgent and emergency care facilities on patient and health system outcomes: a systematic review. Health Services and Delivery Research. Retrieved from https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/164717/#/
Repurposing of clinical trial data: Developing a Repository of Care Home Trials
Lisa Irvine(1), Jennifer Burton(2), Claire Goodman(1)
(1)University of Hertfordshire, (2)University of Glasgow
Background: Secondary analysis of existing trial data is low-risk and low-cost. Large randomised controlled trials (RCTs) conducted in care homes, whilst costly, provide a rich potential source of data about residents. These RCTs cover a variety of health/care topics (e.g. dementia care, medication management, nutrition, or infection), however there is often overlap in assessment and outcome measures used, and information collected on both residents and the care home structure. Trials in care homes monitor participants regularly, for up to one year. Outcome measures, health resource use, and clinical events, as well as care home characteristics, can therefore be tracked over this period, allowing for longitudinal analysis.
If individual patient data (IPD) from existing trials could be pooled, they would collectively provide a large and useful dataset for secondary analysis. Individual patient data (IPD) can be used for exploratory analysis to better understand this population, reduce duplication of effort, and refine future research questions.
Methods: As part of the newly funded DACHA (Developing research resources And minimum data set for Care Homes' Adoption and use programme (NIHR127234)), we aim to develop a repository of individual resident data from existing care home trials. A scoping review has identified potential care home trials for inclusion, and we have secured the agreement of five lead investigators; representing approximately 250 care homes and 4300 residents. Additional trials will be identified through systematic review and snowballing techniques.
The collaboration of trialists will make up the repository Steering Committee, to oversee sharing, combining and repurposing of their existing trial data. Trialists who contribute their data for use in the DACHA study will act as gatekeeper for their respective datasets. All data received will be fully de-personalised, so that only completely anonymised data will be held in the repository.
The care home trial repository will host trials with a range of clinical focus, however several key outcome measures (e.g. Barthel; EQ5D; DEMQol, MMSE) are used in almost all RCTs conducted in care homes. Additionally, clinical indicators such as hospitalisations, falls, and death rates are routinely reported. This pooled individual patient data can be made available to other research teams, in user-friendly datasets specific to their explicit research question. The repository can also report baseline characteristics about care homes and residents as derived from all pooled trial data. In the absence of other datasets, this repository has the potential to be a research resource and guide further work on assessment and development of core outcome sets for this population. Our work will be underpinned by the insights from national expert consultation groups, and public involvement, allowing us to prioritise questions for use of the repository data.
Implications: The repository will be a research legacy of the DACHA programme – a valuable source of high-quality, anonymised, individual participants’ data (IPD) to inform the development of future research, testing of hypotheses and optimisation of study design issues specific to the care home population.
Measuring the impact of external contextual factors on implementation outcomes: a methodology for evaluating complex interventions to improve health
Elizabeth Burns(1), Suzy Hargreaves(1), Cathy Ure(1), Margaret Coffey(1), Suzanne Audrey(2), Penny Cook(1)
(1)University of Salford, (2)University of Bristol
Background: Reducing premature non-communicable disease (NCD) mortality by one third by 2030 requires accelerated evidence-based action on key risk factors¹. However complex public health interventions to address so-called industrial vectors of NCDs² rely on multi-level, multi-component strategies and efforts will be thwarted if researchers do not do more to investigate the impact of external contextual factors on implementation outcomes³. This presentation shares methods used to test the relationship between external contextual factors and intervention impact within a multi-level, multi-component programme aiming to reduce alcohol harm in the North West of England. The intervention, Communities in Charge of Alcohol (CICA), began with five train-the-trainer events between September 2017 and May 2018 in nine different geographical areas. A cascade training model led by the Royal Society of Public Health (RSPH) aimed to build community capability by establishing an initial cohort of at least five Alcohol Health Champions (AHCs) in each area, made up of lay members from the local community and supported by a CICA co-ordinator located in a health service provider. The ‘dose’ of the intervention was reliant on the total number of champions trained as a result of initial train-the-trainer events and subsequent cascade training events.
Methods: Using mixed methods data analysis we assessed twelve external contextual factors at baseline within each of the nine intervention areas. Factors were derived from analysis of 'roll-out' meetings that took place with local health service leads as well as a document review of the local authorities’ public licensing registers. Each intervention area was scored according to the presence or absence of each factor, with a score of 1 assigned if the variable was present, 0 if the variable was absent, and 0.5 if the variable was partially present. Assessments of the external infrastructure were subsequently sense-checked with health service leads at follow-up interviews. A spearman’s rank correlation test was used to measure the association between the infrastructure score and the number of AHCs trained.
Results: Over the course of implementing CICA for 12 months in each area, a total of 123 people AHCs were trained; 95 lay people and 28 professionals. Seven out of nine areas were active for a full year and facilitated at least one cascade training event. Two intervention sites withdrew after nine months and six months. When comparing baseline infrastructure scores with the numbers of AHCs trained over the course of 12 months, there was a positive correlation between infrastructure score and total numbers of AHCs trained (rs = 0.69, p = 0.039). Areas with a higher infrastructure score trained more AHCs.
Implications: Globally community action is frequently put forward as an effective way to reduce the harmful effects of a range of NCDs. Our findings highlight the value of a mixed methods approach and the importance of understanding the relationship between external contextual factors and implementation outcomes. This could enable the full impact of evidence-based interventions to be achieved.
1. Bennett, J., Stevens, G., Mathers, C., Bonita, R., Rehm, J., Kruk, M., . . . Ezzati, M. NCD Countdown 2030: Worldwide trends in non-communicable disease mortality and progress towards Sustainable Development Goal target 3.4. The Lancet. 2018; 392(10152): 1072-1088.
2. Jahiel, R., & Babor, T. Industrial epidemics, public health advocacy and the alcohol industry: Lessons from other fields. Addiction. 2007; 102(9): 1335-1339.
3. Watson, D., Adams, E., Shue, S., Coates, H., McGuire, A., Chesher, J., . . .Omenka, O. Defining the external implementation context: an integrative systematic literature review. BMC Health Services Research. 2018; 18(1): 1-14.
Linking national datasets for quality improvement in services for congenital heart disease
Julie Taylor(1), Ferran Espuny Pujol(1), Rodney Franklin(2), Richard Feltbower(3), Doug Gould(4), Christina Pagel(1), Sonya Crowe(1)
(1)University College London, (2)Royal Brompton Hospital, (3)Paediatric Intensive Care Audit Network, (4)Intensive Care National Audit and Research Centre
Background: We can improve health care services by better understanding current provision. One way to understand this is by linking datasets from clinical and national audits, national registries, and other NHS encounter data. In LAUNCHES QI, we focus on improving services for congenital heart diseases, using five linked national datasets to generate important understanding about: resource use over a patient’s lifetime; variation in services; and where to focus improvement efforts.
However, getting to the point of having 5 linked national datasets is challenging. We present our experience of the data application and linkage to help others planning similar projects. We describe the time, processes and resource requirements involved, highlighting challenges encountered and tips for applications in the current system as well as suggestions for system improvements.
We hope this will contribute to a renewed national conversation about how to balance the justifiably stringent requirements of data protection and governance with the potential opportunity for beneficial research capitalising on the huge amount of health data available.
Method: Our core dataset comprised all records from the National Congenital Heart Disease Audit (NCHDA) from April 2000 – March 2017, defining a national population of patients who had undergone at least one procedure for congenital heart disease. Patients within NCHDA were matched to records in the Paediatric Intensive Care Audit network (PICANet), Intensive Care National Audit and Research Centre – Case Mix Project (ICNARC-CMP), Hospital Episode Statistics (HES) and Office for National Statistics (ONS) mortality data. This would result in a linked dataset allowing the analysis of longitudinal patient trajectories through the health care system.
Obtaining the data requires gaining appropriate permissions from university Information Governance (IG) and ethics processes, the Health Research Authority Research Ethics Committee (REC), and the HRA Confidentiality Advisory Group (CAG), followed by data applications to the data controllers Health Quality Improvement Partnership (HQIP) (for NCHDA and PICANet), ICNARC (for ICNARC-CMP), and NHS Digital (for HES and ONS).
Results: The study set up for LAUNCHES QI began in March 2018, and the process through to data acquisition has taken two years (and is not yet complete). The total number of requested documents completed and/or asked for the entire process was 39, totalling 318 pages.
Study permissions including university processes, receiving ethical and CAG approval, took eight months overall. Time from submission of data applications to receiving data sharing agreements from the data controllers each took between 3 and 7 months. From HQIP approval it took seven months to initiate the matching of patients in NCHDA to PICANet and ICNARC. As of March 2020, NHS Digital data were ready to receive identifiers, although this process is now paused due to Covid-19.
A number of challenges were encountered, including the amount of information required (often duplicated information but not format across applications), lack of clarity on processes, resource limits of audits to fulfil requests, and time resource in the study team.
Implications: The current process for accessing and linking national datasets is time consuming in both input time and elapsed time, complicated and iterative. Time and resources needed, are incredibly difficult to estimate ahead of time, and yet necessary as early on as funding applications. Early decisions can have a significant impact during latter stages and be hard to change, yet it is difficult to get specific information at the beginning of the process.
There is an ethical responsibility to make the most of routinely collected data to improve services. Streamlining the number of applications required for accessing data for health services research, while maintaining stringent governance, could accelerate scientific studies and progress, leading to swifter application of findings and improvements in healthcare.
Collecting experience-based expertise when planning prehospital care research: a stakeholder event about evaluating paramedics working in care homes.
Bridie Angela Evans(1), Mark Kingston(1), Alison Porter(1), Leigh Keen(2), Lesley Griffiths(3), Mari James(4), Stephanie Green(5)
(1)Swansea University, (2)Welsh Ambulance Service NHS Trust, (3)Public Contributor, (4)Public contributor, (5)ENRICH Cymru
Background: Due to medical advances, the population of care homes is becoming increasingly frail, frequently with co-morbidities. Care home residents often require emergency care from 999 ambulances and conveyance to Emergency Departments. Recent innovations have seen paramedics take on non-emergency roles within or supporting care homes. This provides an opportunity for prospective care which can reduce risk of residents needing emergency attendance. This workforce innovation requires urgent evaluation, taking account of the multiple perspectives at stake.
Research is more relevant, feasible and accountable if those who commission, deliver and use healthcare services are able to input their professional and personal insights when planning research proposals. We aimed to facilitate a workshop event to enable diverse stakeholders to contribute experience-based expertise to our research development process.
Method: We conducted a stakeholder event as part of research development work for paramedics working in care homes (PERCH: Preliminary Exploration of paramedic Roles in Care Homes). We invited representatives from care homes, including Enabling Research in Care Homes (ENRICH) network members, ambulance services, primary and secondary care, patient/resident and public members and the research community. To inform discussion, we presented examples of paramedics working in care homes. We then facilitated small-group discussions about how to evaluate such innovations. We recorded views on sticky notes and flipcharts and made detailed notes about the format and content of the stakeholder event.
Results: 23 people attended the event. Clarity of roles and communication processes were considered important to implement the pilot project. Attendees agreed that research outcome measures should include changes in avoidable hospital admissions, emergency department attendances and 999 calls plus staff, patient and family satisfaction. They identified some potential benefits to ambulance services and general practice, such as time saved for other patients, but believed these could be difficult to measure.
Implications: Gaining the insights of a wide range of stakeholders prior to research being designed is an important but under-utilised approach in research development. People who deliver and receive community-based care have insight derived from personal and professional experience which complements research expertise. Research in care homes is challenging. Our approach enabled people with diverse and relevant perspectives to contribute insights which were significant in the development of a research proposal about the role of paramedics in care homes (PERCH study). We submitted this to the Health and Care Research Wales Research for Public and Patient Benefit funding scheme in 2019.
Success, challenges and lessons learnt in recruiting for TANDEM (Tailored intervention for Anxiety and Depression Management in COPD) a multi-centre pragmatic complex intervention randomised controlled trial
Ratna Sohanpal(1), Hilary Pinnock(2), Stephanie Taylor(1)
(1)Queen Mary University of London, (2)The University of Edinburgh
Background: Poor recruitment and retention of participants in clinical trials affects generalisibility of research findings, potentially increasing inequity in provision of health care. In addition to recruiting patients to a multi-centre, pragmatic, randomised controlled trial of a Tailored intervention for ANxiety and DEpression Management in chronic obstructive pulmonary disease (COPD), based on a cognitive behavioural approach (CBA), we are recruiting, training and retaining healthcare professionals to deliver the intervention. We here report on recruitment progress, the complex challenges encountered, and highlight lessons learnt that could help researchers planning pragmatic complex intervention trials.
Method: In TANDEM, there are two levels of recruitment: 1) facilitators (respiratory healthcare professionals whom we train to provide the CBA intervention) and 2) patients (and their carers). The patient recruitment target was 430 over 20 months from primary care, secondary care including PR services and community clinics. Potential patients have mild to moderate anxiety and/or depression with moderate to very severe COPD deemed suitable for referral to assessment for pulmonary rehabilitation (PR). Patient recruitment involved understanding the workings of diverse PR services and patient pathways to PR in the different settings across 17 participating NHS study sites, assessing the availability and capacity of staff and training staff to identify, approach, screen and recruit potential study participants. In addition, we needed to recruit respiratory healthcare professionals, matched geographically to participating PR services (but not working in them to avoid potential contamination of control arm participants) and to local patient recruitment capacity, who were willing to be trained as CBA facilitators.
Results: Twelve NHS Trusts in England and five CCGs with 39 GP practices are participating, and 9 further GP practices have expressed interest in the study. Fifteen research staff (including management of staff turnover) have been trained in the recruitment process. Numerous challenges specific to these organisations/personnel resulted in a delayed start and initial slow recruitment. Although recruitment improved once all the sites were actively recruiting, this has required ongoing training for staff, regular communication and close monitoring by the study team. Facilitator turnover has been a major challenge (see Figure). Thirty-three facilitators have been trained with 15 currently delivering the CBA intervention to patients. Despite recruiting and training additional facilitators throughout, we had mismatches between patient participants needing the intervention and locally available facilitators.
Implications: By mid-January 2020, 392 patients (91% of recruitment target) are recruited into study, and the funder has granted an additional 9 months (till March 2020) to complete recruitment.
Besides focusing on recruitment strategies specific to patients, we needed to consider the multiple organisations/personnel involved in the recruitment pathway and tailor training/support to their diverse needs. The learnings from the TANDEM study (see figure) may be helpful to researchers planning pragmatic complex intervention trials.
Following ‘The Golden Thread’: Working collaboratively with research librarians to improve access to evidence in a mental health trust
Sarah Knowles(1), Sarah Daniel(2), Rachel Steele(2), Samantha Gavaghan(2), Rachel Churchill(1)
(1)University of York, (2)Tees Esk and Wear Valley NHS Foundation Trust
Background: Knowledge mobilisation is the study of how research evidence can more effectively cross ‘the translational gap’ to influence practice and improve care. Beyond increasing one-way communication and uptake of evidence by practitioners, it is recognised that greater collaboration and partnership between researchers and evidence users is necessary to ensure the research that is produced is relevant and implementable. We report a six-month formative evaluation of a partnership project between the University of York and a large NHS mental health trust. The goal of the project was to deliver an enhanced Evidence Access service in collaboration with trust Library and Information Services (LIS). The LIS currently enables staff to submit queries about what research is available on a particular question or topic, and research librarians provide summaries of available evidence. We aimed to explore how the University could best support the service, for example through providing more robust evidence syntheses for complex queries, or by exploiting evidence gaps identified by the service to codesign research proposals.
Survey of 3-year cohort of requests to the LIS to identify service users and explore typical requests.
Collaborative codesign with LIS staff (n=5) using Impact Pathway Mapping. This is a method of codesign which focuses on agreeing core impacts as a primary goal, then using backwards mapping of actions, actors, and behaviours to identify targets for change. We used the iPARIHS (Promoting Action on Research Implementation in Health Services) framework as a guide, to understand the role of:
Context – how the trust setting, priorities and demands influence evidence generation and use
Users – how different users vary in capacity or willingness to engage in research
Innovation – how the Evidence Access service could support research use and generation
Facilitation – how knowledge brokering could help the Evidence Access service promote collaboration between the trust, clinicians and the university.
Results: The service receives around 300 request per year. Queries submitted reflect a wide variety of interests, covering questions of treatment effectiveness, risk prediction and diagnostics, and professional skills and support. Consultants and managers were the primary service users, with mental health nurses underrepresented.
Discussions with professionals initially focused on what the ideal impact of the service should be, with The Golden Thread referring to a linear impact of an evidence request initiating service change and directly improving patient outcomes. Further discussion recognised wider impacts, including capacity building and changing attitudes to engage as active producers of research. Facilitation, rather than simply providing existing evidence or confirming evidence gaps, should aim to foster a research-ready context for informed evidence users to actively engage with and design research studies.
The next stage of the work will pilot a mechanism of triage and escalation of potential LIS questions, involving University partners to support codesign of novel research proposals. This will require consideration of how knowledge brokering support should be embedded into the service, both as part of routine information infrastructures (for example, a portal that automates triage and response) and through professional roles (building capacity amongst LIS to help different stakeholders codesign questions that align academic, clinician, and trust priorities).
Implications: Skills necessary for trusts to engage with research are not only individual research skills but the presence of facilitated systems to support collaborative working with universities. The study demonstrates the value of adopting a conceptual implementation framework to guide discussion. iPARIHS was initially used diagnostically to identify barriers and facilitators to the service, but through collaborative discussion we were able to reflect jointly with service partners to codesign potential solutions, recognising both users and context as dynamic targets for facilitated change.