http://samedifference1.com/2011/11/29/scottish-stroke-survivors-given-a-say-on-research-priorities/
From MIT Medialab; Hopefully this will spread to other countries, I would have a heyday.
For the past five years Farber has been battling not only her own disease but also the wall of resistance erected by those who believe that a patient can make about as much of a meaningful contribution to the process of scientific discovery as a laboratory rat.
What are the best ways to improve cognition after a stroke? How can stroke survivors and families be helped to cope with speech problems? Can exercise and fitness programmes help improve function and quality of life and avoid subsequent stroke?
Remarkably, there is little evidence to answer any of these questions, but following an exercise to identify what matters most to people who have had a stroke, or looked after someone affected, there is hope that research will address these areas.
A shortlist of 226 research questions has been whittled down to a top 10 by the people at the sharp end during an 18-month programme of consultation in Scotland.
Work was led by researchers at the Nursing, Midwifery & Allied Health Professions Research Unit (NMAHP), who run the Database of Research in Stroke (Doris). The team turned to the James Lind Alliance (JLA), which unites patients and carers with health professionals to identify and prioritise treatment research questions.
JLA priority-setting partnerships (PSPs) gather questions through surveys, newsletters and searching clinical guidelines for research gaps. Previous PSPs have tackled asthma and schizophrenia.
Doris had a tough challenge reaching participants because many had post-stroke communication problems and lived in the Highlands and islands. But Scotland has a network of support groups run by organisations such as CHSS [Chest, Heart and Stroke Scotland], The Stroke Association and Different Strokes. Alex Pollock, NMAHP research fellow, says: “We worked hard to capture diverse views: sat down with stroke club members with impairments, scribed for people unable to write, worked with communication partners for people unable to speak, extracted questions through discussions with people with cognitive impairments. We comforted people in tears, [who were] struggling to describe what mattered.”
His team devised an online presentation with recorded narration for people with visual problems. They also wrote an information sheet for people with aphasia, a language disorder affecting about one in three stroke survivors.
In total, 513 questions were gathered for possible research studies, half from stroke professionals and half from those with personal experience. Kathleen Frew is a CHSS community support worker who co-ordinates groups across west Scotland and cares for her husband, who had his first stroke 17 years ago. “In the NHS, you can’t access patients without complex permissions, while we have links with over 40 patient groups,” she says. Frew believes their input will revolutionise research: “Patients and carers always seek better condition management. Acute care is great, but you want evidence for later: what sort of physio, occupational therapy, communication support, really work?”
She recalls a stroke patient who was registered blind and told that returning to work was impossible. “He met a physiotherapist who put him on to the RNIB. They taught him strategies enabling his return to work. How many patients would benefit if we had evidence for the effectiveness of such interventions?”
Lester Firkins gave up his job in banking after losing his son to vCJD. He advises the Department of Health on research from a user perspective. He chaired the stroke PSP, and co-chairs the JLA. “The steering group put in such effort to reach people across NHS Scotland and it reaped rewards: people can tell when others truly want to hear their views,” he says.
So how have previous PSPs improved research to help people living with another condition, asthma? A collaboration between the universities of Southampton and Aberdeen is to develop a DVD teaching breathing exercises at home to people with asthma. It is funded by the government’s National Institute for Health Research (NIHR) which also funds the JLA.
Several charities have used the outcomes of past PSPs to inform their research. Asthma UK is co-ordinating research into the top concern identified by asthma patients – the side-effects of steroid treatments. It found that about a third of people with asthma do not take their steroid medicines as prescribed. Previous studies found that this often stemmed from concerns about their treatment. For many, such concerns are not alleviated by the available information, which is unsurprising if, as this study found, health professionals felt that side effects would be relatively infrequent, yet people with asthma reported them frequently.
The hope now is that the top 10 stroke priorities will be widely disseminated to potential funders.
• Sophie Petit-Zeman is a member of two JLA steering groups. View the top 10 stroke research priorities at lindalliance.org/top-tens.asp
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