Breast cancer survivors now helping with HealthNewsReview.org story reviews

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We are pleased to welcome two breast cancer survivors as news story reviewers for HealthNewsReview.org.

It’s an idea that had been suggested to me some time ago by the National Breast Cancer Coalition (NBCC), which offers superb training to its members in how to evaluate medical evidence in an effort called Project Lead.

The first two (is it presumptive to suggest there may be more?) women who have joined our review effort are:

Christine Norton, a 20-year breast cancer survivor, longtime active member of NBCC and co-founder of the Minnesota Breast Cancer Coalition.

Suzanne Hicks, diagnosed in 2003, closed a 30-year psychotherapy practice in Albany, NY in 2005, and has now started a local breast cancer peer study group.

Today Christine worked on her first story review, and her expertise was immediately evident. So, on this review, we had three reviewers: a breast cancer survivor; a scientist specializing in breast cancer decision support; and a journalist (me).

This is the beginning of a new attempt to get more voices involved in the review of stories on HealthNewsReview.org. In 2011 we will explore ways to involve more “wisdom of the crowds” in our daily reviews, so that we can better assess what people want and need from health care news stories – and better judge whether they’re getting what they want and need.

Stay tuned.

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Comments

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John Novack

January 7, 2011 at 1:39 pm

Hi Gary,
That’s an exciting development, congratulations. Would be happy to see if we can help from the patient perspective. Let me know.
Cheers,
John N.

Medha Talpade

January 7, 2011 at 3:38 pm

I applaud your decision to include a cancer survivor to your group of reviewers. Statistical and clinical significance are both important perspectives each with their own sensitivities. Wonder if you will have the chance to study the inter rater reliability of the ratings?
Medha

Annette Bar-Cohen

January 7, 2011 at 6:56 pm

Gary, Congratulations to you, Chris and Suzanne for this milestone event! How timely to receive this news while we are at Project LEAD in Tampa. We will definitely share this with the 47 students here and let them know about this new way that trained advocates are bringing their perspective to bear and influencing the process. Thanks so much for taking us up on the suggestion and really changing the conversation!! Take care, Annette

Gary Schwitzer

January 7, 2011 at 7:06 pm

Medha,
We tested inter-rater reliability before we launched the site, using a random sample of 30 stories. Two reviewers coded each story. The average percent agreement between the two reviewers across the ten ratings criteria was 74%.
But you give a valid reminder that it is worth doing again now that we have added new reviewers.

Gilles Frydman

January 8, 2011 at 8:51 am

Gary,
Great initiative! Participatory medicine is on the move.
If you are looking for more reviewers may I suggest Musa Mayer, a fantastically well educated and scientifically versed breast cancer advocate. Musa has been evaluating stories for over 20 years. Her involvement with online communities for breast cancer survivors predates my involvement with medical online communities! She now also publishes patient-driven research.
And if you are looking for more types of cancer, I will be delighted to put you in contact with other great expert e-Patients, such as Robin Martinez for kidney cancer, who certainly knows more about that disease than the vast majority of oncologists (just ask Dave :-)

Gregory D. Pawelski

January 8, 2011 at 7:41 pm

As our understanding of cancer biology continues to advance, this disease has come to be understood as many different diseases. As seen with PARP inhibitors, mutations work with other proteins. Genes do not operate alone within the cell but in an intricate network of interactions. The cell is a system, an integrated, intereacting network of genes, proteins and other cellular constituents that produce functions. The PARP inhibitors are turning out to be very useful.

Barb Shipman

January 17, 2011 at 11:27 am

Gary,
I’m new to HNR.org and your blog. I am a recent breast cancer survivor who is very excited to learn of your work and that of the Nat’l Breast Cancer Coalition. Please work hard and keep us all posted, AND welcome more women to join your review effort.
I have 5 biological sisters. Three of us have been diagnosed and treated in the last 5 yrs! I am hopeful that you and your work will uncover some of the much needed research to find the CAUSE of cancer.
Thank you,
Barb