Work Package 3: Development and implementation of an MDS
Background to Work Package 3
In the UK there are almost 1.6 million people aged 85 years and above, and more than 500,000 people are aged 90 years or older. While many of these older people live independently at home, a significant minority will move into care homes (facilities that offer health and social care support) for help with their activities of daily living.
All care homes routinely collect information about their residents to help plan and provide care. Unlike some other countries, across the UK there is no agreed method of record keeping, or what is the minimum amount of information about care home residents, often called a minimum data set (MDS) that should be kept about each resident. This is the information needed to provide care and to share with others who provide support to residents (e.g. the NHS, the regulator, and family). Consequently, care home staff can be required to record the same information for different services and the absence of a standardised approach limits what is known about people living in care homes. Work package (Work Package 3 (WP3) is focused on what could and should be included in a resident minimum data set. This work will
- Document the range of data that care homes collect now on their residents
- Identify the different minimum data sets used by various countries
- Document what needs to be in place for care home staff to be able to use a minimum data set to help them provide care for residents
From these three pieces of work we will find out
- what is already known about residents but not organised in a consistent way;
- what would be the relevant content of minimum data sets for English systems of care;
- what the best way is to introduce and support the use of an MDS in care homes
How will we get the information we need?
We will survey a sample of care homes from across England. The survey will ask care homes the range of information they record about their residents, how they do this (e.g. paper records or as electronic records) and how they use the information.
We will review research papers that describe using MDS and systematically describe the different types of information about residents that are recorded and how they are used to inform care.
We will review the evidence (called a realist review) of how care home staff use an MDS as part of their everyday care, to develop a theory of what works, when, and in what circumstances. This will help us to know how an MDS works in different care home settings, who needs to be involved in residents’ assessment and recording of data, and how its use improves care.
How will the findings be used?
The findings from the two reviews and the survey of care homes together will help us to identify the core information that care homes need to collect about their residents.
We will take these findings and discuss with different consultation groups what they think should be included in a minimum data set. These consultation groups will include people from care homes, universities, the NHS and the regulator. The combined information will aid the development of the prototype MDS for testing in work package 5.
Care home survey and review of minimum data sets content: Barbara Hanratty firstname.lastname@example.org
Realist Review: Claire Goodman email@example.com
WP3 is led by Professor Claire Goodman at University of Hertfordshire and Professor Barbara Hanratty at University of Newcastle
This WP has 3 elements: (i) a realist review; (ii) mapping of care home generated data, and (iii) a consultation and priority setting exercise. The aims are to:
- Develop an understanding of how a MDS could work in the UK context,
- Identify care home generated data that could contribute to a MDS
- Generate a matrix of potential variables and their characteristics, and identify stakeholder priorities for inclusion in a MDS.
(i) Realist review: The purpose of the realist review in WP3 is to develop a theory-driven understanding of how internationally deployed MDS systems offer transferable learning and/or utility for the UK. Interrogating research on how MDS have been used by care home staff will increase understanding of how different contexts, assumptions and mechanisms affect its feasibility, and relevance to practice and for different groups of residents.
We will draw on realist methods to develop a theory driven understanding of how internationally deployed MDS systems offer transferable learning and/or utility for the UK. The realist approach assumes that causal mechanisms are embedded within particular contexts and social processes, and that it is crucial to understand the relationship between these mechanisms and the effect that context has on their operationalization and outcome (62).
Established MDS aim to support comprehensive assessment of the resident, their needs and linked care planning. The Inter RAI (International Resident Assessment Instrument) is the most commonly used MDS. It consists of a data collection form, a set of assessment items with identical definitions, time frames for observation specific to the long term care setting, built in protocols for clinical and quality assessment, triggers that identify residents at risk, status and outcome measures and user manual. Research has demonstrated the value of a MDS to commissioners and service providers in enabling identification of care needs and residents at risk of ill health. In North America, where its use is mandated, it is used in large scale research and cross national comparisons, for example in measuring the quality of care in different facilities. Our NIHR OPTIMAL study on NHS working with care homes employed an adapted InterRAI. Whilst it was possible to identify resident characteristics associated with unplanned hospital admission, some measures were not appropriate for UK residents, staff found it added to the burden of record keeping plus, its use did not influence care decisions. Other studies identify the need to integrate the use of MDS into the routines of the care home to achieve a sustained impact on resident outcomes (69). There is also evidence that residents with worse health status are more likely to have missing data, it adds to work stress (affecting staff retention) and does not always capture what is important to residents and carers.
To develop a theoretical understanding of how effective implementation of a MDS improves resident and organisational outcomes within the current care system the review will have three iterative stages:
(1) Synthesis of review findings from WP1, linked work on integration of NHS, social care and CQC data, the use of Comprehensive Geriatric Assessment in care homes and scoping of how MDS is represented as changing staff behaviours, practice and quality of care to achieve improved resident and service outcomes;
(2) Development of likely ‘Context-Mechanism-Outcome’ (C-M-O) configurations to build an explanatory theory(or theories) of how a MDS might work in the UK that are tested in the evidence on MDS implementation;
(3) analysis and synthesis of the programme theory.
Searches will be conducted from 2005 (to reflect the growing interest in MDS related research) purposive, iterative and including MEDLINE, EMBASE, CINAHL, Social Sciences Citation Index, sources of grey literature and Google Scholar and lateral searches.
The outcomes of interest will be informed by WP1 as well as resident identified priorities for care from the PPIE work (if different to the research evidence) but will include, resident outcomes, staff adherence to MDS processes and resources used. The review will consider recurring patterns of association between contexts and mechanisms (demi-regularities) detectable across studies. It is likely analysis will be informed by systems thinking and organisational theories of change that focus on the way that values and beliefs defined at a strategic level are embedded across the workforce.
Findings from the review will be tested further in four group interviews with frontline staff in two areas (East of England, West of England) working with staff from Quantum Care (who use predominately paper based records supplemented with resident specific digital data from monitoring technology) and Somerset Care (who have used e records for over 15 years). The realist review findings will directly inform how the development and introduction of a MDS in WP5 is conceptualised and implemented.
(ii) Scoping of international MDS content and mapping of care home generated data for inclusion in MDS: To identify the full range of data variables, scales and outcome measures used in MDS across the world, we will conduct a rapid scoping review of international MDS research on resident assessment and care. Using the libraries generated by searches for WP1 and the realist review, this review will chart the variables/outcome measures used and care processes or experiences evaluated. Our focus will be on outcomes relevant to resident quality of life and the provision/monitoring of care, but not available from existing health and social care data (e.g. on pain, social engagement). . It recognises that in addition to the programmes of work in specific topic areas (e.g. pain, depression) undertaken by the Inter-RAI consortium there is research that addresses other measures such as quality of end of life care, quality of life and testing the validity (or not) of oral health measures used within existing MDS.Research that identifies gaps in the assessment and care of older people is also relevant. For example, a review on the implementation of Comprehensive Geriatric Assessment (CGA) found that frailty had not been considered as a determinant of outcomes among older people. A realist review of CGA by the team (CG, ALG) in care home settings signalled the importance of knowing when and who from the health and care home teams is involved in assessment and review of care.
We will use established methods and apply strict inclusion criteria (English language publications since 2005 identified by searches in WP1 and 2, observational or experimental study designs, data generated by MDS in long term care facilities for older adults). Data will be extracted and charted without quality assessment. This work will produce an accessible guide to the current content of international MDS, and relate each data item to the component of resident care or experience being measured. Of direct relevance to WP4 and 5, the content review will also be a freely available resource for researchers, supporting the development of international comparative studies and MDS development.
(iii) Mapping of care home generated data for potential inclusion in MDS: Our previous work with care homes has identified multiple data sources specific to the care home that are not synthesised, shared or electronically stored. Care home providers collect information to support care delivery and for reporting to commissioners and regulatory authorities. This includes technology generated data on resident vital signs and mobility, medication intake, preferences and risk assessments. This component of WP3 aims to map data collected by care home providers for their own use that has potential for inclusion in an MDS. We will compile a list of the content, form and use of care home generated data, and assess the willingness of care home providers to contribute data items to an MDS that is shared with external partners such as the NHS.
Participants: Working with a purposive sample of English care providers (110 or 20% of the 5500 organisations who run the 11300 care homes in the UK) that will include the five largest providers who are responsible for over 20% of beds. The sampling matrix will account for funding source for care homes (not/for profit) and residents (self-funder, local authority, NHS continuing care); size of organisation; bed numbers; nursing/residential status; CQC rating and geographical location. We would aim to achieve a response rate of 60%. An adequate response rate to ensure that we have captured the range of data collected by care homes would be between 40-50%.
Intervention: The findings of the realist and scoping reviews will be used to develop a semi structured telephone and online survey for care home providers and local regulators. The semi-structured telephone and online survey for care home providers and local regulators will collect objective data on what and how information (on care processes and delivery, resident characteristics, health status, functional ability and quality of life) is collected, collated and shared within care homes and provider organisations. Our experience of working with commissioners and care providers in this area, points to recent, rapid growth in new data collection initiatives in care homes. For example, use of the National Early Warning Score in care homes is now encouraged in some regions, with NHS support for digital data collection. The WP3 survey work is essential to capture information on recent developments of this type that have yet to feature in published academic articles. We will also produce an accessible guide to the current content of international MDS, and relate each data item to the component of resident care or experience being measured.
We will address the issue of commercial sensitivity, with carefully worded questions on willingness to contribute to an MDS and barriers to data sharing. The survey will be discussed, piloted and launched with the cooperation of the Care Providers Alliance (who represent 11 national associations of independent and voluntary adult social care providers) and study steering group members from LaingBuisson, Four Seasons, Quantum Care and the Registered Nursing Home Association. Follow up by email (x2) and telephone (x2) will be used to boost response rate.
Outcomes: An overview of the range of data generated and collated by care home providers in England to support care delivery and to fulfil regulatory and governance requirements.
Matrix development. The findings of the scoping review and care home survey will be synthesised into a matrix that presents potential MDS content items, alongside characteristics such as ease of access, availability, cost of collection, and perspective (resident, clinical provider, resource manager, etc.). This visual display of potential MDS content, with pros and cons of individual items and scales clearly articulated, will be a resource for use in a priority setting exercise with the expert national collaboration (see below) and in discussion with stakeholders and the research team. Used in this way, it will inform the content and direction of WP5.