Across the NHS in Wales there are extraordinary people doing extraordinary things. As the NHS’ 70th birthday approaches we talk with some of those people, who have helped improve and change research in Wales over the last seven decades.
Research is vital to identify and provide the best health and social care to patients.
Zoe Boult, senior nurse, explains: “I have been working as a research nurse in Cardiff for over five years, during which time I’ve seen big changes both here and nationally as clinical trials have become more advanced and complex, structured research career pathways have emerged, and the importance of research in the NHS has grown in visibility across the UK.
“For me research is about changing things for the better; innovating and improving. I’ve been involved in studies aiming to develop new treatments, better manage chronic conditions, improve people’s quality of life and optimise patient care and NHS services. All those experiences have shown me the value of a supportive network of peers in moving research opportunities and our professional practice forward.”
Bob Woods, Emeritus Professor of Clinical Psychology of Older People, describes his experience of changes in research:
“When I started researching dementia care in the NHS over 40 years ago, it was a Cinderella topic. Now, rightly, it receives much more attention. In fact, how we provide care for the increasing number of people living with dementia is the critical issue for health and social care in the 21st century.
“The changes in the scale and complexity of research over that time have been equally dramatic; my first trial of a new intervention to help people with dementia involved 14 people, and my most recent study involved 500!
“Thanks to research, we now have several evidence-based psychosocial treatments we can offer people with dementia and their families, and go a little way towards improving quality of life. There’s still much, much more to do, but I’m proud that here in Wales we’ve already made a difference to the lives of many people affected by dementia.”
Skilled and well-trained research professionals are vital for conducting world-leading research, and developing those people requires expert support.
Lynette Lane, senior training and development manager, describes the development of her team over the past decade: “Back in 2007, we ran just 32 courses a year relying exclusively on external providers and venues.”
“Now our national training programme provides over 100 courses per year to around 1500 delegates across Wales.
“When I first set out as a research nurse training was on the job and structured training was scarce and expensive. Now my team seek to respond to the needs out there as they change and emerge, supplying the right training at no cost to those attending.”
Helen Dyer, cardiothoracic clinical research manager, gave her view: “I have experienced vast improvements since joining the NHS in 1977. The most important change for me occurred in 1996 with the introduction of Good Clinical Practice. It was the first step towards a common standard for safeguarding participants and ensuring credible and accurate data. I feel that Health and Care Research Wales has given a real focus on high quality research since it was established in 2015, and given me the guidance and training I need to deliver that research.”
Of course, the extraordinary contribution of the people of Wales through participating and shaping research is the reason that research can happen, and has grown over the years.
Jennie Williams, research nurse, reflected that : "‘Being a Research Nurse has given me first hand insight into the impact participating in research can have on patients health and wellbeing, both clinically and in their everyday life. Whether it’s through a novel Psoriasis drug that has given a patient a new found confidence to show their skin, an innovative surgical intervention that reduces recurrence and subsequent additional treatment in oncology or, a purely altruistic opportunity to contribute towards increasing understanding of a rare disease. Participating in a research study not only furthers our knowledge and medical advances it empowers patients, providing them with the ability to make decisions about their own care."
Patient and public empowerment is at the very heart of the ever increasing focus on public involvement and engagement in research. This area of work has seen more and more people involved in shaping research questions to meet real-world needs, how it is delivered and the findings turned into better health and social care services and policies.
Jayne Jones, head of research delivery for North Wales notes: “By far the most satisfying development over the last 20 years has been the growing involvement of patients and the public in all aspects of research development, design and delivery. When I worked as a research nurse in 2000, we were not allowed to put up a poster to promote research in case it was viewed as coercive. Today patients and the public have a real voice and influence on the research agenda and drive research programmes to ensure they benefit real people. The result is quality, relevant research which really is delivering ‘tomorrow’s care’.”
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