Tagged / Health

Paper published on ‘living evidence’

international, open access, Publishing, Training, writing

The Nepal Journal of Epidemiology published today carries an article on so-called ‘living evidence’ as an on-going synthesis approach that provides up-to-date rigorous research evidence [1].  This short research methods paper argues that living evidence is particularly useful in rapidly expanding research domains, uncertain existing evidence, and incorporating new research evidence that may impact policy or practice, ensuring that health worker, managers and health-policy makers have access to the best, i.e. the most recent evidence.

The Nepal Journal of Epidemiology is an Open Access journal, and hence freely available to researchers across the globe.  The paper has been co-authored by researchers from the Denmark, Qatar, Mauritius and the UK.

 

Prof. Edwin van Teijlingen

Centre for Midwifery & Women’s Health (CMWH)

 

Reference:

  1. Sathian B., van Teijlingen E., do Nascimento I.J.B., Khatib M.N., Banerjee I., Simkhada P., Kabir R., Al Hamad H. (2023) Need for evidence synthesis for quality control of healthcare decision-making. Nepal Journal of Epidemiology 13(3):1288-1291.  DOI: 10.3126/nje.v13i3.61004

BU MSc Student, Sarah Clark, gives a presentation at EDS ECHO Fatigue Summit 0n 21st October

Sarah is giving a Community Voice presentation at the EDS ECHO Summit Series: Fatigue – Causes and Management at 4.32pm UK time in the “Exercise, Pacing and Diet” section, sharing some of her own tips and tricks for life managing several complex chronic health conditions.    This will be followed by participation in the live online Q&A session at approx 4.45 pm UK time.

 

Sarah, who has hypermobile Ehlers-Danlos syndrome, is a Masters student at BU studying Clinical and Developmental Neuropsychology.  Sarah sits as a patient expert in the EDS International Consortium, Psychiatric and Psychological Aspects Working Group.

Sarah presented her BMJ paper “Help me trust you after my misdiagnosis” at The EDS Global Learning Conference in Dublin in August.

Sarah was diagnosed in May 2022 with Autism spectrum condition, a realisation she only made thanks to attending the autism lectures on her MSc course here at BU!  She recently completed her qualitative MSc Research Project, supervised by Dr Emily Arden-Close, on “What are the daily experiences of autistic people living with hEDS?” and has just started working on writing her dissertation up for submission to a journal.

Sarah is studying part-time at BU due to the time-consuming nature of managing several complex conditions. But alongside managing her wellbeing, Sarah regularly engages in public awareness work, volunteering and charity fundraising work. She is also a keen photographer, writer and yogi and was featured in Hotpod Yoga’s Move with Purpose Campaign recently where she talked about her late-autism diagnosis: https://hotpodyoga.com/move-with-purpose/

Sarah is hugely grateful to the BU Community for the support and encouragement she’s had over the past few years which has allowed her to make great leaps in improving her own health and wellbeing, as well as giving others hope.  You can read more about Sarah’s inspirational journey on her website.

 

Introduction to Patient and Public Involvement

Guidance, NHS, Research Ethics, Training

This half day course is an introduction to PPI and will:
1. Define PPI and why it matters
2. Explore the links between PPI and health equity
3. Explain how to deliver PPI and support those involved

It will be an interactive session, including input from someone with lived experience, talking about their involvement in research.

It will be delivered by Sue Bickler from the Involving People team at Help and Care, an organisation that ‘helps people and communities live the lives they choose’.

Sue has worked in the voluntary sector, local authorities, and health, and has substantial experience engaging with people and communities to ensure that services meet their needs.  Her current role brings together the four Healthwatch in Hampshire and the Isle of Wight (HIOW), ensuring that patient voice is central to decision making in the HIOW Integrated Care System and that people are equipped to support effective Patient and Public Involvement (PPI).

The session is funded by Clinical Research Network Wessex and is open to all health and care researchers working in Wessex including public contributors and community organisations.

Book your place here.  A link to the online training will then be sent to you.

Improving information for people taking part in clinical research

Guidance, NHS, Research Ethics

The Health Research Authority (HRA) has launched new Quality Standards to improve information given to people who are invited to take part in research. The Quality Standards have been launched alongside Design and Review Principles, which show researchers and Research Ethics Committees (REC) what the important ethical considerations are for participant information.

  • The new HRA Participant Information Quality Standards will help research organisations to understand what good participant information looks like, and will make clear to researchers what the Research Ethics Committees will consider as part of the ethics review, including the review of participant information. The REC will support researchers to create information that meets the Quality Standards.
  • The aim of the Quality Standards and Design and Review Principles is to make participant information better, and to make the way that RECs review that information more consistent. The documents set out the basic criteria that all participant information must meet, and covers language, accessibility, and mandatory content.

Next steps

The Quality Standards and Design and Review Principles will be phased in from autumn 2023. As study materials are prepared in advance, REC reviews of participant information will initially be presented to research organisations as recommendations as opposed to actions required for approval.

From December 2023, the Quality Standards and Design and Review principles will become mandatory and will be applied to all research applications submitted for review.

Changes to participant information are currently the most likely reason for ethics committees to give a provisional opinion. Using this guidance will increase the possibility of receiving a favourable opinion.

Available templates

Remember that BU has Participant Information Sheet templates that provide much of the required wording to ensure your participants are making a fully informed decision before agreeing to participate.

It is vital that when compiling your information sheets that you remember to include the HRA GDPR transparency wording.

Questions or concerns?

If you have any questions regarding these new standards or about clinical research in general, please email Suzy Wignall, Clinical Governance Advisor – swignall@bournemouth.ac.uk or clinicalresearch@bournemouth.ac.uk

NIHR Be Part of Research platform

Guidance, NHS, Research Ethics

The NIHR Be Part of Research platform is an online service that makes it easy for research participants to find and take part in health and social care research. Participants may search for trials and studies taking place looking at certain health conditions and in locations accessible to them.

Clinical researchers may also make use of the service to extend their recruitment and widen their recruitment methods, as the platform has been designed to make it easier for researchers and potential study participants to find each other.

Using Be Part of Research to recruit participants

To use the service for your recruitment, the study must meet the following requirements:

  • Be funded or supported by the NIHR. This includes studies on the NIHR Clinical Research Network Portfolio.
  • Have Research Ethics Committee approval to use the service as a recruitment tool.
  • Have a dedicated point of contact such as a pre-screener or website for interested volunteers to engage with your research team.

Getting your study onto the Be Part of Research platform

Once your study has been registered on either ISRCTN, ClinicalTrials.gov, or on the NIHR Clinical Research Network (CRN) Central Portfolio Management System (CPMS), your project will then appear on Be Part of Research. Given those visiting the site are mostly patients and members of the public, medical and scientific terminology should be omitted when writing your study summary, with plain English used to ensure the information is accessible to a broad audience. In order to do this, you should:
  • Keep it short – but don’t oversimplify it. The reader must understand what the study is trying to achieve.
  • Imagine you are talking to the reader.
  • Take out any jargon.
  • Make sure you cover the what, why, when, where and how so they have the basics of your study.

Additionally, to make sure that participants contact the appropriate person, the contact details provided on ISRCTN or ClinicalTrials.gov should be up to date and accurate. In general, the registry record should be monitored continuously so that any changes are reflected on Be Part of Research as soon as possible.

Further support/contact

If you have any questions regarding the platform or regarding clinical research in general, please email Suzy Wignall, Clinical Governance Advisor: swignall@bournemouth.ac.uk or clinicalresearch@bournemouth.ac.uk