Harnessing primary care data for clinical research and trial recruitment – supported by EMIS
The UK’s health and care system produces a vast amount of data that can support research and deliver improvements in the quality of care patients receive. Primary care data are of particular importance due to their quality, richness, and longitudinal nature. It can serve to identify patients eligible for recruitment into clinical trials, be used to enrich other sources of data to carry out clinical research or be used to generate real-world evidence. Primary care, and the data it holds, must form an essential part of the post-pandemic rebuild of the UK’s clinical research sector.
However, primary care lags far behind secondary care in its clinical research activity. GPs are under huge pressure to deliver care for patients and have limited time to engage in research. GPs lack incentives to undertake research, and there is less investment in infrastructure and capacity which has led to a less prevalent research culture in primary care. As a consequence, the vast majority of patients using primary care do not find themselves offered opportunities to participate in research.
As novel research for this paper demonstrates, there is a significant appetite among clinicians and patients to take part in research at the primary care interface. Most primary care health practitioners want to do more and feel that it would enhance their job satisfaction. Patients, too, would like more opportunities to take part in research. Making this happen requires clarity about the barriers that exist and precision about the changes needed to address them.
Research is impeded when GPs and other healthcare practitioners lack the tools to identify and recruit the right patients for trials, and often due to lack of time or resource, to directly engage with patients about research. There is wariness about the use of data and GPs’ obligations as data controllers, as well as concern about the suitability of commercial research in a primary care setting. However, as the survey shows, even with these challenges the desire to do better is strong.
Newmarket Strategy is delighted to publish Harnessing primary care data for clinical research and trial recruitment, sponsored by EMIS. Click here to read the full paper.
The paper makes six specific recommendations for addressing the barriers to primary care research:
Recommendation 1: The Royal College of General Practitioners, the Royal College of Nursing, the General Medical Council, the Nursing and Midwifery Council, the National Institute for Health and Care Research, NHS England and the Health Research Authority should provide clear guidance about how health and social care professionals should be best utilised within the primary care team to facilitate and support primary care research.
Recommendation 2: The National Institute for Health and Care Research’s new Research Delivery Network should provide funding to train a wide range and number of primary healthcare practitioners in its upcoming Workforce Plan for Research Staff, with dedicated funding to support this.
Recommendation 3: The Department of Health and Social Care and NHS England should promote and facilitate the resourcing of primary care to take part in commercial trials so that primary care is reimbursed for the cost of undertaking research.
Recommendation 4: The Royal College of General Practitioners, the National Institute for Health and Care Research and the NHS England funded Primary Care Networks should encourage the use of platforms embedded in primary care which facilitate the recruitment of diverse patients into clinical trials using data held within Electronic Health Records.
Recommendation 5: The Health Research Authority must ensure that primary care is appropriately represented in the development of their future guidance on ‘identifying and contacting people about research’, which will seek to reduce current variation in the interpretation of the law.
Recommendation 6: The Royal College of General Practitioners, the National Institute for Health and Care Research and the NHS England funded Primary Care Networks should develop guidance that encourages GP practices to use texting services to engage directly with patients about taking part in research. Further information about suitable trials that patients are eligible for should be provided directly to them in order to increase engagement and participation.