Transcript: Three patients and their stories contributing to Cochrane's success

Bernd Arents: My name is Bernd Arents. I was born in 1964. Five days after my birth I developed a severe form of eczema, and I've had it ever since.

[Bernd's lifelong experience with eczema has led him to become a leading consumer advocate in Amsterdam. He was invited to participate as a consumer member on a team creating a Cochrane review.]

I was fortunate that the authors, they involved me from the beginning, at the protocol stage, because in the protocol stage you also have to select which outcomes you want to use, which outcomes are important to patients. I think it was especially interesting to do the 'Implications for practice', because we know how we are treated in clinical practice.

[Bernd contributed as an author on this Cochrane review: 'Emollients and moisturisers for eczema' by van Zuuren EJ, Fedorowicz Z, Christensen R, Lavrijsen APM, Arents BWM]

When we submitted it for peer review, one of the reviewers made a comment that said: "I particularly like that section in the 'Implications for practice'. Was this written by the consumer?" And yes it was, I wrote mainly that part. And he noticed that because it was so patient oriented.

[Bernd is now working on a new Cochrane review on atopic dermatitis.]

[Sara Yaron is a lawyer. She lives in Tel Aviv and has been contributing to Cochrane since 1999.]

Sara Yaron: I think that the PLS, the plain language summary, is the fortune for laypeople that need reliable information.

I was diagnosed when I was 36 years old with breast cancer. It was in the year 1982. The surgeon, when I was diagnosed, he wanted to remove my breast. And he said to me: "That's the only way that we can treat you. We cannot treat you other way, there does not exist any other way." And I, with my common sense, I couldn't get it that I have only one option.

[Sara picks up a Cochrane brochure at a conference she is attending.]

And then I read a paper which one of the Breast Cancer Review Group sent to me, that they could heal me without cutting my breast - only by removing the tumour and getting chemotherapy and radiation.

And I had the operation, the surgery that I choose. And it was the first time in this hospital that they made this kind of operation. It's called a lumpectomy.

It helps me to help myself - and to help many many, especially women with breast cancer. The Cochrane Library gives you reliable information, gives you an up-to-date information, which makes you a more intelligent and more involved patient.

George Selby: I'm George David Selby. I'm ten years old.

[George Selby is a fun-loving 10-year-old boy. He lives in Wigan, in the UK.]

I like playing on my swing, playing Minecraft, building lego and talking to my teddies.

[George was born at the Liverpool Women's Hospital at just 32 weeks.]

Rebecca, George's mum: So basically, at 32 weeks pregnant, out of absolutely nowhere, George just decided he was coming.

Paul, George's dad: And it just went pretty fast from there.

Rebecca: Whirlwind.

Paul: [They said] we'll give Becca two lots of steroids as actually George's lungs won't be as developed as they should be.

Rebecca: I think "fighting chance" is what they said. "To give him a fighting chance we need to give him these steroids." It was very very scary.

[Rebecca received injections of corticosteroids because it is an intervention with proven benefit. Evidence of effectiveness was established in a seminal Cochrane review that was updated in March 2017.]

Rebecca: I was basically just reading and I spotted the symbol. And then there was just this little explanation underneath about "It's funny that they use this symbol because..." And then it was about all the trials and things. And then I was like, Oh my goodness, that's what George had.

And then I did some research into it, fact checked it. And then I found all about Cochrane. And I was like, wow. Yep, this definitely resonates with me.

[The Cochrane logo contains the forest plot from the original systematic review.]

Yeah, Daddy's had a tattoo, hasn't he? [George: Hmm-hmm] With the evidence on it, hasn't he? [George: Hmm-hmm] And the circle is you, isn't it? [George: Hmm-hmm]

There are scientists there working away behind the scenes and they are making a difference. It definitely makes me feel really good to know not only that he had the treatment, but why he had the treatment, and how he had the treatment. And how that treatment almost wasn't a treatment. [Paul: Yeah] So definitely, it makes me feel really grateful that that stuff does exist.

Paul: I'm very, very lucky to have George with us. When we found out obviously...it was a tricky start to life for him. We found out the other children in the special care unit in the ward that George was in didn't make it. We're just blessed.

[What does George think of Cochrane?]

George: I think of hope.

Rebecca: Ah, bless you.

Paul: Why hope?

George: Because it gives me hope for the future outcomes.

["This simple intervention has probably saved thousands of premature babies - including my son." Rebecca Selby]

[Helping to improve the health of people, everywhere. Cochrane is for everyone.]