10 tips for improving diversity in research

Posted on April 18, 2024 by capcbristol

By Julie Clayton, Patient and Public Involvement and Engagement Lead, Bristol Brain Centre and Centre for Academic Primary Care, University of Bristol, Victoria Wilson, Patient and Public Involvement and Engagement Advisor, Centre for Academic Primary Care, University of Bristol and Shoba Dawson, Senior Research Fellow in Inclusive Research, School of Medicine and Population Health, University of Sheffield

Between them, the authors have over 20 years of experience supporting patient and public involvement (PPI) in health research, and conducting research in the field. In this blog they share their top 10 tips for improving diversity in research, drawing on the insights and reflections of individuals and communities they have worked with.

The challenge

“I have a grant deadline coming up – I need to talk to a diverse group of patients!”

We … Read more

ATHENA in the Daily Mail – is all publicity good publicity?

Posted on June 6, 2023June 6, 2023 by capcbristol

By Lorelei Hunt, Patient and Public Involvement Representative on the ATHENA Shingles Study, Centre for Academic Primary Care, University of Bristol

Doctors involved in the ATHENA shingles trial were interviewed by the Daily Mail, under the headline ‘Could taking a depression pill prevent lasting agony of shingles? Scientists launch clinical trial to examine effectiveness of treating post-herpetic neuralgia with amitriptyline‘.

We need to recruit more people to take part in this important pain prevention study, so raising awareness is a good thing. But some comments made on the newspaper’s website about the medication (amitriptyline) were unhelpful or wrong.

As the patient representative on the research team, I agreed to read through all of them. There were a lot, so this took a while! Unfortunately, many people did not read past the headline and recalled their own past, sometimes unpleasant experiences of having taken … Read more

How can involvement in research support survivors of domestic abuse?

Posted on November 25, 2021 by capcbristol

by Will Hunter, Communications Executive, National Institute for Health Research Bristol Biomedical Research Centre (NIHR Bristol BRC)

Hard Evidence is a theatre piece written and performed by Shass Blake and Alison Prince. It follows the story of two friends, Jan and Christine, who both have experience of domestic abuse, but are at different points in their journey to finding support. It shines light on how involvement in research influenced their individual journeys and empowered them to start helping others.

Alison and Shass met whilst taking part in the COMforT study. COMforT developed and pilot tested a trauma-specific mindfulness course for women with experience of domestic abuse and post-traumatic stress. The study, led by Dr Natalia Lewis, worked with an advisory group of six women with lived experience of domestic abuse who supported to plan, deliver, analyse, and disseminate study findings.

The play was the brainchild of … Read more

Meet the stars of Hard Evidence – a new production about public involvement in research

Posted on October 11, 2021October 11, 2021 by capcbristol

by Will Hunter, Communications Executive, National Institute for Health Research Bristol Biomedical Research Centre (NIHR Bristol BRC)

Hard Evidence, a new production developed through collaboration between public contributors to research, academics and creatives from acta community theatre in Bedminster, Bristol, highlights how getting involved with research can empower women who have experienced domestic abuse to support others in a similar situation.

Will Hunter, Communications Executive at the National Institute for Health Research Bristol Biomedical Research Centre (NIHR Bristol BRC), caught up with Shass Blake and Alison Prince who wrote the script with Ingrid Jones (acta) and will perform in the production in November. They came to the project after being involved in the CoMForT study, led by Dr Natalia Lewis at the Centre for Academic Primary Care, which developed and pilot tested a trauma-specific mindfulness course for women with experience of domestic abuse and post-traumatic stress.

Thanks … Read more

Finding the best moisturiser for eczema – the impact research can have on everyday lives

Posted on May 20, 2020November 16, 2020 by capcbristol

by Zoe Wilkins, Trial Administrator, Centre for Academic Primary Care, University of Bristol

It’s safe to say that I knew little about eczema before working as an administrator on the Best Emollients for Eczema (BEE) trial and even less so about emollients, the different types of moisturiser used to treat the condition.

My own children occasionally suffered with very mild eczema; tiny patches here and there that would clear up with a couple of days of moisturisation. So, it was only after starting work on the trial that I began to understand the complexity of this condition. Some suffer seasonal ‘flare-ups’, for others year-round torment, which can be triggered by many different factors.

Although I knew that if you had eczema it was important to keep skin moisturised, I had not heard of the word ‘emollient’ before. Emollient is the medical word for moisturiser and comes in … Read more

Involving advanced heart failure patients in shaping research questions: A Priority Setting Partnership

Posted on August 8, 2019August 9, 2019 by capcbristol

by Dr Rachel Johnson, NIHR Clinical Lecturer in Primary Health Care, Centre for Academic Primary Care, University of Bristol and Anna King, NIHR Health Protection Research Unit in Evaluation of Interventions at the University of Bristol

Our Priority Setting Partnership (PSP) began as the idea of a group of doctors who have witnessed how difficult the experience of heart failure can be for patients and their families. Heart failure is one of the commonest causes of unplanned hospital admissions, and it can place a heavy burden on carers and families.

Our aim was to put the needs of patients, carers and health professionals at the heart of the research agenda. We followed the methods of the James Lind Alliance Heart (JLA), a not for profit organisation set up to ‘open up discussion between patients and clinicians to agree on priorities for future research.

The PSP … Read more

Including the views and experiences of parents and children in a clinical trial: The Best Emollient for Eczema (BEE) Study

Posted on May 20, 2019November 16, 2020 by capcbristol

By Dr Eileen Sutton, Research Fellow and Trial Coordinator – BEE Study, Centre for Academic Primary Care, University of Bristol

Qualitative research in trials

Many clinical trials now include qualitative research methods – which can include interviews, focus groups, or observations – alongside clinical and survey data collection. These kinds of research methods can be used to help the design of trials or to help us understand what is going on when a treatment or service is delivered in a clinical trial. For example, we can interview research participants to find out more about how they have used or experienced a treatment, in much more detail than we could capture in a survey. Combining different research methods can help researchers to get a more complete picture.

Our research

Around 20% of children in the UK experience eczema, which is characterised by dry, itchy skin. Eczema can … Read more

Worried about asking people to take part in research? Don’t be!

Posted on September 4, 2017July 26, 2018 by capcbristol

by Dr Alison Gregory
Research Fellow (Traumatised and Vulnerable Populations), Senior Research Associate
Centre for Academic Primary Care
@AlisonGregory73

When I first became a health researcher, I felt that people would see taking part in research as a bother, a pain, or a waste of their time and that, by association, they would see me as akin to a nuisance caller, intent on coercing them into some unwanted activity. Thankfully, after 10 years doing research, it’s become apparent to me that this is far from the truth.

For a start, the tentativeness with which most of the researchers I know proceed as they recruit participants is anything but a hard-sell. In fact, due to necessarily stringent ethics and governance processes and practices, strict eligibility criteria, and a healthy dose of ‘only wanting to do what’s best for people’, we are possibly more in danger of being talked out of taking … Read more

Pre-grant public and patient involvement and engagement (PPIE)

Posted on August 7, 2017July 26, 2018 by capcbristol

A partnership and panel event to support NIHR School for Primary Care Research (SPCR) FR15/16 applications

by Catherine Jameson
Senior Research Associate and Public and Patient Involvement and Engagement Coordinator
Centre for Academic Primary Care

Pre-grant public involvement is vital to relevant and successful research. It is considered the gold-standard approach. In practice, the issue is that before the grant is awarded, there are often no resources available to conduct high quality public and patient involvement (PPI).

With SPCR funding for pre-grant PPI supporting FR15/16 applications, we developed an event to carry out and promote early PPI at the Centre for Academic Primary Care. This served to achieve PPI for these rounds of SPCR applications, foster links between members of the public and researchers and establish early PPI as achievable and accepted culture.

The event comprised a public panel and parallel sessions of Partneropoly – an interactive game … Read more

We need to think about treatment journeys when evaluating complex interventions

Posted on July 17, 2017July 26, 2018 by capcbristol

by Dr Katrina Turner
Senior Lecturer
Centre for Academic Primary Care
@DrKMTurner

Most clinical trials are pragmatic in nature and aim to assess the effectiveness of a new treatment against ‘treatment as usual’. When interpreting trial results, researchers tend to focus primarily on what treatment participants in different trial arms received. This may be difficult in the usual care arm, as this arm is often poorly defined, whereas the intervention arm is often clearly defined prior to the trial starting. In addition, this focus is very narrow. Treatment is a process and patients’ experiences of accessing and receiving care could also influence their treatment outcomes, and thus the trial’s results.

A paper recently published in Trials highlights that differences do exist between the experiences of participants randomised to usual care and intervention arms. These differences relate not only to what treatment participants receive, but also how they access and … Read more