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>>McIlwain: One of the objectives of my post
is to try to get people more involved understanding what evidence is,
how to use it, and how to make better decisions in their healthcare.
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>>Nabhan: When I started working with the Cochrane group,
there wasn't anyone from the consumer panel who’s Egyptian or even from North Africa or the Middle East.
Now, there are many.
>>McIlwain: It’s really about communication.
As soon as you’re willing to put information out there through social media,
through blogs, through emails,
consumers want to be involved. They’re out there and they want to be contacted.
They want to participate in reviews.
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>>Cates: We’re trying to involve consumers as much as we can in terms of setting our agenda,
and also we ask consumers to look at our plain language summaries
and sometimes, when they understand the review process,
to do a peer review of the whole review.
>>Dellavalle: Before getting involved with the Cochrane,
I had no conception of bringing patients into decision making processes in terms of doing research on health care.
Being involved with the skin group in doing our systematic review,
looking at these medications whether or not they prevent melanoma,
we had to identify a patient with melanoma
who was interested in this problem and make what we were doing understandable at the patient level.
That was a mind blowing concept to us at the time.
And not an easy one. I think it remains a difficult,
practical issue of how to bring patients into these very technical highly specialised jargon-filled arenas.
>>Grimshaw: What we try and do is engage consumers so they help us frame the question.
Often if you ask researchers to frame the question, they come up with outcomes
that don't particularly excite or aren't that relevant for consumers.
So one example that I'm aware of is that in musculoskeletal health,
often researchers think the major issue that patients are concerned about is pain.
Whereas actually, when the Cochrane musculoskeletal group
went out and surveyed patients, the key outcome they said was a problem for them was fatigue.
That because of their disease state, they actually got very tired all the time
and if we could do something that would help them to overcome that tiredness
that would be as good or better than dealing with pain.
>>Owens: One of our goals is to make Cochrane reviews and products
generally accessible to people that they are not written in heavily technical language
and that, so that, a reasonably well informed consumer
can pick up a Cochrane Review and make sense of what it says and take it to their doctor
and say, “Tell me about this treatment for this condition that I need more information on.”
>>Liberati: This idea of each review being accompanied by a plain language summary
seems to be a simple thing but it really makes a lot of difference in the way people understand.
>>Gyte: Most patients don’t understand medical or research language and so the plain language summary is there to,
my view, is there to inform patients who want to find out about their condition
or their daughter’s condition or their husband’s condition,
to try and work out shared decision-making in terms of treatment.
>>Hill: Making a shared decision was not a health outcome we talked about 10 or 15 years ago
but is an outcome which is now measured in trials and doctors are trained to help people
share that decision with them about treatments. So that kind of thing is an enormous sort of cultural shift.
>>Walsh: I believe as a consumer advocate that Cochrane's work is important to me because as a patient,
it's wonderful to know that there is more reliable evidence available.
>>Dickersin: We don't know who’s going to be effective in getting the world to change and pay attention to evidence.
There's a good chance that in many cases, consumers will insist on it
and perhaps they’ll be the movers and shakers for certain areas where doctors may be less important
in moving forward to be evidence based
so you have to engage everyone and I think consumers are an important voice.
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