SSPC in the Press

SSPC STUDY HOPES TO PERSUADE ONE MILLION SCOTS TO SIGN UP FOR RESEARCH REGISTER - Press Release from University of Dundee, 21st September 2010

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."

Courier - By Marjory Inglis, health reporter Published in the Courier : 26.04.1026th April 2010

Father of CJD victim to give keynote speech

A bereaved father who has become a catalyst in health research since the death of his younger son from a rare and devastating brain disease will speak in Tayside this week. Lester Firkins will address a conference in Crieff on Tuesday and will speak at a seminar at Ninewells Hospital on Wednesday, advocating that patients and clinicians should have more say in the type of work that medical researchers undertake. His son Ellis was just 25 when he died from variant CJD, the human form of so called "mad cow disease" which affects the brains of cattle. Mr Firkins said, "It is a very rare condition. Ellis was case number 90. He died on March 1, 2001, and I think we are up to case number 165 now.".

Mr Firkins said he had no complaints about the treatment and care given to his son, but not much was known about the disease and there was a drive at that time to find out more. An expert asked to lead the work insisted on working with a lay person and he chose Mr Firkins. It was successful and led Mr Firkins to become interested in research priorities for a wide range of conditions and how patients and carers could influence those.

He will be a keynote speaker on Tuesday at the Scottish School of Primary Care's conference in Crieff Hydro Hotel, where he will address GPs and healthcare professionals from all over Scotland. The title is Why Patients And Clinicians Should Tell Researchers What To Do. On Wednesday he will speak at a public seminar at Ninewells for the Tayside Academic Sciences Centre

Courier By Marjory Inglis, health reporter Published in the Courier : 16.04.10

Terms for obesity thought 'rude' by many

Doctors are being given a hard time by overweight patients offended when the subject of their weight is broached, a Dundee University researcher has said. Professor Annie Anderson, a nutrition specialist with a particular interest in tackling obesity, said one Tayside GP got a visit from an angry father after the doctor told his wife their child was overweight. She said she had come across "a few instances" of health professionals getting a hard time from patients when they tried to talk about their weight.

Professor Anderson, from the Centre for Public Health Nutrition Research, and colleagues elsewhere in Scotland have just completed research on people's response to being told their "weight status." Their preliminary findings are to be presented by a colleague at the forthcoming Scottish School of Primary Care conference at Crieff Hydro Hotel.

One woman told researchers that if a doctor told her she was "obese", she would probably go in to a depression and eat sweets and crisps. Many of the interviewees told researchers that fat and obese were extremely negative terms, described as "offensive," "an insult," "rude" and "horrible." Excess weight is one of the most important preventable causes of cancer in non-smokers. Being overweight can contribute to a number of health problems and so GPs and other health professionals must find a way to speak to patients about their weight without antagonising them and upsetting them and in such a way that will motivate heavy people to lose weight. Professor Anderson said doctors and other health professionals meet resistance when broaching the topic of obesity. She said that some patients take offence at being told they were overweight or obese and let their doctors know they were not happy about the subject being broached. Prof Anderson said, "We have to recognise there are sensitivities and health professionals would appreciate some guidance on how to start talking about it."

Cindy Gray from Stirling University, one of Prof Anderson's collaborators, will speak at the Crieff conference. Prof Anderson said that the conference would be attended by a number of GPs and she believed they would welcome the opportunity to discuss how they might best broach the subject of obesity when talking to patients. She said, "We have got to deal with it. We can't just shirk it."