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Scotland’s research objectives must strive to align with inclusive World Health Day message
5th April 2024
Striving for people to receive equity of access to research and have their voices heard is vital to the inclusive aims of World Health Day (7 April) organised by the World Health Organization (WHO)
The theme ‘My Health, my right’ aims to champion the right of everyone, everywhere to have access to quality health services, education, and information. Making research open to everyone and providing opportunities to get involved is fundamental to this.
Supported by NHS Research Scotland, a collaboration of NHS boards and the Chief Scientist Office of Scottish Government, more than 1,500 clinical research studies take place in Scotland each year, involving over 30,000 patients.
Making research open to everyone and participation as easy as possible is a key action in the UK vision for clinical research; and a range of initiatives are in place to encourage more people to get involved, participate and benefit from research.
The Scottish Health Research Register (SHARE) project is a partnership between NHS Scotland, the government, and universities to develop a Scottish research register of people aged 11 or over and living in Scotland who are interested in helping with medical research.
By joining SHARE, participants agree to allow the coded data in their various computer records to check whether they might be suitable for research projects about health.
Professor Brian McKinstry, SHARE Director and Professor of Primary Care E-Health, University of Edinburgh and NHS Lothian said: “We believe that key World Health Day aims such as patient’s rights to make decisions about their own healthcare are to be lauded and are exemplified by many of our initiatives.
“People can take part in research in a number of ways, but making yourself visible to those conducting important trials is a great first step. That’s where SHARE can make a huge difference to Scottish patients who are keen to take part in trials that are of relevance to them.
“To date, over 300,000 people have registered to join SHARE and that number continues to grow all the time.
“Joining the SHARE register only takes a minute but will significantly increase the effectiveness of health research in Scotland.”
Also supporting greater visibility of research opportunities, Be Part of Research (BPOR) is an online service that makes it easy to find and take part in health and care research. It helps people to understand what research is, what it might mean to take part, as well as showing what research is currently happening across the UK. Trials and studies can be searched for by condition, location or via keywords bringing up a list of trials that might be suitable.
Be Part of Research provides an opportunity to help members of the public find out what research is currently happening across the UK. Prospective participants can search by condition, location, or via keyword, bringing up a list of trials which may be suitable.
Many opportunities exist to get involved in health and social care research, with Patient and Public Involvement (PPI) another essential facet. It extends to all the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community, and has been shown to improve its quality and impact by involving patients from the outset and helping to shape trials around their thoughts and experiences to help produce better results for all.
In support, NRS and the Chief Scientist Office (CSO) of Scottish Government hosted a PPI event in Dundee to celebrate the second anniversary of the launch of the Shared Commitment to Public Involvement while showcasing the strength and diversity of PPI across Scotland.
A diverse programme showcased everything from the use of PPI in pre-clinical research, in data science and in ageing research; to support for PPI, rewards and finances, impact and evaluation. It also shared positive work with children and young people, underserved groups, and those with additional needs.
World Health Day serves as a reminder that research should be open to everyone - it is essential people have the right to be involved in all health and social care research and participation is made as easy as possible.
