21 September 2010
Dundee study hopes to persuade one million Scots to sign up for research register
A pilot study looking at how researchers can overcome objections to participation in studies and trials has been launched by the Universities of Dundee and Edinburgh.
Upon completion, the researchers leading the study hope to use their findings to persuade up to one million Scots to volunteer for research trials which would help develop new drugs and treatments, and improve the health of the nation.
Professor Frank Sullivan, Director of the Scottish School of Primary Care at the University of Dundee, is currently leading the pilot with Edinburgh's Dr. Brian McKinstry. They are examining the type of people who volunteer, the reasons why they may do so, and the objections raised by those who choose not to.
Upon completion of this phase, they plan to move on to the main project, which will see the team attempt to recruit an army of between 500,000 and 1,000,000 volunteers from across Scotland - up to one-fifth of the nation’s population - for a new Scottish Population Health Research Register.
He says that Scotland’s technical ability to conduct research is not yet matched by a practical capability to approach possible subjects directly with the consequence that recruitment to research is much more difficult than it might be and that some projects consequently fail.
'We want to engage with patients who suffer from, or who have suffered from, all kinds of diseases as well as healthy people,' he said. 'We want to be able to ask all manner of people to take part in trials and studies. Researchers across Scotland will be able to draw on this large database and match up suitable volunteers for their studies.
'That is why we are looking to connect with a huge number of people who are potentially willing to take part in research. This might mean clinical trials, interviews, observations studies, and follow ups. We can do a lot just by accessing records if patients have given permission to do so.
'If we can generate a database of this size then there will be huge benefits. It will improve the ethical situation surrounding research projects, and there will be a huge efficiency gain for future studies. There will be less expense recruiting volunteers in future, and the process will be speeded up.
'This means drugs and treatments will potentially reach the market more quickly and that patients will hopefully receive better care.'
The initial, £70,000 pilot project is already underway and will run until March. In that time, the project - funded by the Chief Scientist Office, Tayside Academic Health Service Collaboration, and Lothian Academic Health Service Collaboration - will be working with five practices in the Tayside area and a further five in Lothian to persuade patients to sign up to research they may be eligible for.
Professor Sullivan’s team will be writing to patients from these practices as well as leaving information for them in the GP surgery. As well as adding the names of the volunteers to the database, they will also analyse who agrees to take part, who doesn’t, and why this is.
The factors influencing their decision will be considered ahead of the main project. If funding is received, the extensive recruitment campaign will be rolled out across Scotland over a three-year period.
'This is an infrastructure project that we must undertake to get the main project right,' continued Professor Sullivan. 'The research will ask people how often they are willing to take part in studies. They will have the option not to take part in certain types of research, and they will also be able to have their details removed from the register at any time.
'At the moment, a patchwork of different registers exists, but there is no central database bringing together groups of people who may appear disparate in isolation but together constitute a large enough constituency for specific types of research.
'Some clinics might have a large group of dementia-sufferers, which is a difficult group of people to reach for many researchers but the proposed Scottish Population Health Research Register would allow a large number of scientists to access this group.
'Other groups are much easier to reach, with up to 90% of sufferers taking part in research. Anyone over the age of 16 is eligible to take part, as it’s just as important to have healthy people in the database as we need to find out what it is about them that means they don’t become ill when others do.
'We have many ideas about how to recruit volunteers, but one of the most important things for us to deal with is the perfectly legitimate concerns many people may have about taking part in research studies and seeing how we can overcome them.'
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