The South East Wales Trials Unit (SEWTU) based in the Centre for Trials Research at Cardiff University recently co-hosted the South West Society for Academic Primary Care 2016 Annual Meeting along with colleagues in the Division of Population Medicine. The event brought together over 160 experts and researchers in the field of primary care to present abstracts intended to inform best practice. None of the work presented had been published prior to submission, so all material was both fresh and leading-edge. Several of the Centre’s researchers presented at the conference. Here two of them talk about current research they presented.
The Importance of Primary Care
Primary care is defined as the first point of contact for healthcare that a person receives and includes all the day-to-day healthcare given by health care providers. In the UK, delivery is by:
- High street opticians
- Other first point of contact health care providers
The importance of primary care research is often overlooked because treatments are widely assumed to be a fixed, reliable and with obvious choices for professionals and clinicians to opt for. However, any treatment routinely offered needs to have a reasonable evidence basis in order to underpin this. Well-conducted studies evaluate data, which either render current options obsolete, demonstrate that alternative approaches are more effective, or provide a greater pool of evidence to show that the current care approach is optimal.
Wide-Ranging Research Expertise
The Society for Academic Primary Care (SAPC) advances primary care through education and research and seeks to improve primary care by positively impacting policy and practice. The South West Society of Academic Primary Care 2016 annual event featured sessions on research into important health areas including:
- Long-term conditions
- Older people
- Mental health
Talks also covered professional practice and development.
Centre for Trials Research Presentations
Researchers from the Centre for Trials Research presented on a wide range of topics including care home settings, teenage mothers, point of care testing for urinary tract infection and PhD research on maltreatment. The Centre specialises in conducting Randomised Controlled Trials, the gold standard in assessing the effectiveness of drugs, interventions and healthcare policies.
Building Blocks 2: Assessing Long-Term Outcomes of a Primary Care Based Home-Visiting Intervention for Teenage Mothers
The first Building Blocks study looked at a programme of home visits by specially trained nurses (called the Family Nurse Partnership or FNP) designed to support young mums expecting their first child. The programme was compared to usual health and social care in a study involving 18 English centres and followed children until they were two years old.
Dr Fiona Lugg presented the follow up research project so far (Building Blocks: 2-6) to follow up these same individuals until that child turns six. In contrast to the first study, which was based on a large number of interviews, this is looking specifically at routinely collected health and education data—this is information that the GP, hospital and school collect when looking after people. The study is examining this information to explore the long term effects of extra home visits from family nurses versus the services currently available to families in England.
Here Dr Lugg talks about this approach and possibilities for future research.
Routine data defined
Routine data is information that has been collected routinely for day to day clinical and administrative purposes. These data are increasingly used for research purposes because they are already collected and available, and present clear opportunities to assess the effectiveness of treatments, interventions and policies.
The building blocks: 2-6 study is a project run by the South East Wales Trials Unit based in the Centre for Trials Research at Cardiff University that is using routine data to follow up participants who were part of a randomised controlled trial that assessed the effectiveness of the Family Nurse Partnership (FNP) programme.
Why is data linkage important for studies and trials?
Using routine data for research has many benefits. It means researchers can have access to information about a participant’s diagnosis, prescription or referral without asking participants to recall this information, thus reducing the burden on participants.
How is data linkage being used on Building Blocks 2?
In the context of Building blocks: 2-6, we are interested in sensitive outcomes such as whether a child has ever been classed as “in need”. By accessing this information via the National Pupil Database (Department for Education) we are able to report on social care outcomes without directly asking participants this information.
What is unique about the way you are using data linkage on Building blocks 2?
In order to access this information, as well as health outcome for all participants, the method involves securely sending identifiable information to these data providers to undergo a process of “data matching”. This means that they use information such as date of birth to find the individual in their records (hospital records, school census). The information related to these participants can then be securely transferred and saved in a safe haven for researchers to access without needing to identify an individual to conduct the analysis.
Participants of this study have all been contacted to be informed of this study and the method outlined above and had the opportunity to opt out before any data was transferred.
What are you currently exploring with data linkage and where do you think this has the potential to go?
This study is using both routine health and education data to answer an important research question. There is a lot to still learn about the quality of the data and validity of the information received from the data providers. However, it is an extremely exciting and novel project that will add knowledge both from the results of the study and the method of the work.
Research Priority Setting in Care Homes
Victoria Shepherd is a research associate and research nurse based in the South East Wales Trials Unit. Her research interests include vulnerable populations such as children and older people, and also ED/ITU nursing. She is currently involved in research to improve evidence gathering within care homes, in order to help determine priorities for future research. She discusses the background to her work here.
Background to the work
At present there is little evidence for much of the care provided for older people in care homes. Given the wide range of areas that require further investigation, and limited resources, one solution is to encourage stakeholders to participate in decisions about the priorities for future research.
Why is this so important?
The UK has an ageing population with an accompanying rise in the number of older people requiring long term care and, as people are living longer with long-term conditions, older people in care homes have increasing complex care needs.
If this area of research is neglected, what might some of the consequences be?
There have been concerns raised about the quality of care provided (British Geriatrics Society report ‘Quest for Quality’, Care Quality Commission ‘State of Care’ report, British Geriatrics Society ‘Failing the Frail’ ) which can result in care needs not being consistently met and unnecessary hospital admissions.
What’s different about the approach you are taking?
This is the first study to establish the research priorities for older people requiring long term care in the UK. Care home staff throughout the UK formed an ‘expert panel’ and took part in a series of consensus building rounds that identified, and then ranked, the topics they considered were most in need of further research.
Who are you currently connecting with on the project?
We are engaging with a number of funders and other policy stakeholders to ensure that our findings can be incorporated into their funding strategies, and also a broad range of other researchers to begin addressing the research questions that have been identified as priorities during this study.
Who would you ideally be looking to partner with?
Ultimately we hope that sharing these results with clinicians, researchers in similar fields, and funding bodies will help to inform the care of older people by ensuring the future research agenda can be focused on the areas of greatest need.
What has the response been like so far?
There has been an exciting amount of national interest already, given that the results of the study have yet to be published! Presenting at SWSAPC gave an early opportunity for feedback, an opportunity to raise the profile of the Centre for Trial Research’s work with this population, and also to engage with other researchers interested in addressing some of the areas we have highlighted as priorities.
What are the next steps?
We anticipate that the results will be published shortly. We will continue to engage with researchers, clinicians, third sector stakeholders, and funders to help ensure our findings inform the future research agenda.