CFS mentioned in first two paragraphs.
http://www.thelancet.com/journals/lancet/article/PIIS1474-4422(11)70219-8/f=
ulltext
The Lancet Neurology, Volume 10, Issue 10, Pages 874 - 875, October 2011
doi:10.1016/S1474-4422(11)70219-8Cite or Link Using DOI
Patients have their say on research priorities
David Holmes
Traditional ways of prioritising research are giving way to a more
democratic process, with researchers working in partnership with
patients. David Holmes reports.
=93Chronic fatigue syndrome researchers face death threats from
militants=94=97the depressing headline of a recent investigation by the
Observer newspaper in the UK. The campaign of intimidation and threats
against scientists by a minority of activists who claim that
researchers suppressed evidence that chronic fatigue syndrome has a
viral cause is extreme, shocking, and vanishingly rare. But, atypical
as such a case clearly is, it serves as a reminder of the sometimes
complicated relationship between patients and the researchers who seek
to better understand and treat their diseases.
Perhaps one of the most jarring aspects of the chronic fatigue
syndrome militancy is that the picture of conflict between patients
and researchers that the extremists' actions paint is so at odds with
the increasingly close and fruitful relationships being established
between many patient groups and research groups. Traditionally,
setting priorities for research has been the province of clinicians
and academics, but there has been an increasing realisation that the
public should be more involved in decisions about what is researched
and how that research is designed and undertaken. Chris Polman directs
the Multiple Sclerosis Center at the VU Medical Center in Amsterdam
and advises several research foundations, including the Dutch MS
foundation, Reuma, and the Arthritis Foundation, and has been involved
in designing trials for multiple sclerosis treatments since they first
became available in the 1980s. He told The Lancet Neurology that =93it's
critically important that patients and patient groups are involved in
decisions on trials, especially in indicating what's important to them
and what's not so important=94.
INVOLVE is a UK-based advisory organisation funded by the National
Institute for Health Research and founded on the belief that =93research
which reflects the needs and views of the public is more likely to
produce results that can be used to improve practice in health and
social care=94. Sarah Buckland has been at the organisation since its
inception in 1996. Now Director, Buckland says she has seen a huge
change in attitudes towards public involvement in research. =93Back when
INVOLVE first started there was a lot of reticence or a lack of
understanding about why involving the public makes a difference=94,
Buckland told The Lancet Neurology. =93And yes, there are still
researchers and others who can't quite see the value or are wary of
involving the public for various reasons, but acceptance really is
beginning to grow and more people are realising how patients have
managed to contribute to research and improved the quality.=94
Susanne Sorensen, Head of Research at the Alzheimer's Society in the
UK, agrees that researchers are much more open to the idea of
involving the public than they have been in the past. Crucial to this
increased acceptance, Sorensen says, is the growing realisation that
=93contrary to what many people thought, [involving the public] is not a
conservative force, it is not a force that directs us only towards
care because many of them are very keen on basic science and
discovering more about the aetiology of the disease=94.
UK patient charities have led the way in terms of getting patients
involved in research. Launched in 1999, the Alzheimer's Society's
research network is probably the oldest managed programme to get
patients=97or more often carers=97involved in setting research priorities,
and was set up to provide a grassroots counterpoint to the =93old boys'
network=94 that prevailed in neurology in the 1990s. =93The same people
sat on panels at the national medical research council, the
Alzheimer's Society, the Alzheimer's Society Research Trust etc, and
they awarded each other funding=94, Sorensen recalls. =93That doesn't mean
that it wasn't good research, because they were probably the best
people around, but in the Alzheimer's Society we have a big grassroots
membership and felt that we really needed to have those voices heard
and those voices influencing what we fund.=94
The research network has expanded steadily in the 12 years since it
began, and it has provided a template for similar programmes at the
Multiple Sclerosis Society, Parkinson's UK, and countless others.
However, listening can be a complicated exercise. Around 200 lay
volunteers in the research network each get all the proposals that the
society receives for its responsive-mode funding. =93We get about 50
comments in on each funding application from our members, which is a
good spread=94, Sorensen explains. These comments are then worked into
the process to decide on what applications get funded. The volunteers
=93have a real input into what we select for funding=94, says Sorensen.
=93We also ask them every other year to set the priorities for our
research programme; we ask them what is important to them, what would
you like to be researched, what would you like to get out of
research.=94
Listening to its research network members has led the Alzheimer's
Society to back successful projects that probably would not have been
funded elsewhere. Notably, the society supported several groups that
were investigating tau rather than amyloid. =93If you go back to about
2000 there was still a big discussion between tauists and amyloidists,
and people interested in tau were seen as second class and often
didn't get funding elsewhere=94, Sorensen explains. =93Well, we funded
researchers looking at tau consistently and=85 that has turned out to be
very fruitful and very influential.=94 The logic of the patients and
carers who make up the research network was simple: if everybody else
is going with amyloid and it is not leading anywhere at the moment, we
should look somewhere else. =93Sometimes they take a simple position
like that: we must take a risk on something else=94, says Sorensen. =93It
was seen as quite risky at the time, which is amusing now.=94
For Polman, taking the ideas of patients on board is essential for
improving the design of trials to ensure that the chosen endpoints are
relevant. =93For example=94, he says, =93if you want to measure the severit=
y
of disease then a neurological exam exists for reflexes etc, but I've
never heard a patient complain about slow reflexes because that's not
something that patients experience in daily life, it's something that
the doctor tries to evoke that's not relevant.=94 And according to
INVOLVE's Buckland, input from patients can also improve recruitment
to trials. =93There are lots of examples of how patients have been able
to say that if you do research in this way then people won't want to
take part, and that can be as small as changing the times that you're
asking people to come in for a treatment.=94
Improving the design and conduct of clinical studies and building
trust between researchers and the public are important products of
these interactions. But there is a danger that some patient
involvement can amount to little more than a box-ticking exercise.
Getting the right patients involved is imperative, argues Sorensen.
=93It's no good to have a universal group of patients sitting in your
hospital, because somebody with arthritis might not have very
pertinent opinions about dementia research, with all its specific
problems=85and there are so many issues about taking people in for
interventions etc that might be completely different for other patient
groups.=94 Getting the right type of lay, lived experience is as
important to getting salient patient input as getting the right type
of clinical expertise is to the design of clinical research. =93That's a
big problem in public and patient involvement at the moment=97that
groups are being formed in hospitals who have to provide a lay point
of view but they can only really generalise if it's not their lived
experience=94, says Sorensen. =93I think it's difficult, and I think the
charities are probably the better sources for patient involvement
because they tend to be about specific types of disease.=94
But although charities are well placed to provide an interface between
patients and researchers, they also have to operate within tight
financial constraints. Keeping a small army of volunteers abreast of
the latest scientific developments and enabling them to attend site
visits and be fully trained and supported does not come cheap, and
many balk at the cost. Cost is not the only issue, according to
Buckland. =93It is time consuming and it does take more thinking through
when researchers are doing it=94, she says. =93Where the thinking upfront
hasn't happened and there's not enough time, or the time and energy
and thought hasn't been put into how things might work, sometimes
things do go wrong. But then what research project doesn't have things
go wrong.=94 In Sorensen's opinion, although the financial and
logistical burdens are =93something other charities might attack=94, the
benefits in terms of innovative and high-quality research far outweigh
the negatives. =93I really think that if you're spending public money,
you have to ensure that you bring people with you and that you try to
address what they want.=94
Addressing research questions that matter to the people affected by
neurological disorders, in a way that satisfies the practical and
ethical demands of patients and their families, is central to the
success of clinical research. Finding new ways of involving patients
and the wider public in clinical studies is likely to become
increasingly important in the future, as researchers recognise the
enormous value of working in partnership with patient groups.
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