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Better Knowledge, Better Health? Making Research Relevant, Accessible, and Prioritized to Patient Needs.

April 8, 2015

This week #hcsmca will be hosted by long-time community member, Marie Ennis-O’Connor (@JBBC). Join her at April 15, 2015 at 1pm ET (time zone converter).

By Marie Ennis-O’Connor (@JBBC)

headshot of Marie Ennis-O'Connor

Marie Ennis-O’Connor

With a personal history of breast cancer at age 34, and close to a decade spent as a patient advocate, I still hesitate when asked to answer the question “should I get a mammogram?” It’s a question I still can’t answer definitively – and I’m not alone. Breast cancer screening is a controversial subject – particularly in the case of younger women.

A Canadian study published in the British Medical Journal in January 2014 concluded that annual mammography in women aged 40 to 59 does not reduce mortality from breast cancer and more than 1 in 5 breast cancers diagnosed by a screening mammogram represented an over diagnosis. A month after publication, the American College of Radiology and Society of Breast Imaging issued the following statement:

The recent breast cancer screening article (Miller et al.) published in the British Medical Journal (BMJ) is an incredibly misleading analysis based on the deeply flawed and widely discredited Canadian National Breast Screening Study (CNBSS). The results of this BMJ study, and others resulting from the CNBSS trial, should not be used to create breast cancer screening policy as this would place a great many women at increased risk of dying unnecessarily from breast cancer.

Both the BMJ publication and the American College of Radiology statement are freely available on the Internet, but how do women know which one to rely on when it comes to making a decision about breast health? In an age of digitized health information and the rise of the proactive patient, we still need context and expertise to interpret the research. Shared decision-making only works if both parties have access to the right information and can interpret it. If we are unable to find relevant studies and evaluate them in the context of other scientific evidence, we cannot make the best possible decisions. Instead of more information (which may only lead to information overload), we need more accessible, understandable and credible information on which to base our decision-making.

Even when researchers address questions of importance to patients and clinicians, they often fail to provide answers that are useful in practice.  The challenge lies in making the vast amounts of evidence generated through research credible and useful for informing decisions about health. One way in which to do this is through systematic review – a critical assessment and evaluation of all research studies that address a particular clinical issue. Systematic reviews are regarded as the best form of medical evidence on which to base health decisions.

Venn diagram of Evidence based medicine

Cochrane, a global independent network of researchers, professionals, patients, and carers, makes systematic reviews available through its library. There are over 31,000 people in 120 countries involved in production of over 5200 Cochrane reviews. Cochrane researchers use transparent and reproducible research methods that are selected with a view to minimizing bias, thus providing more reliable findings from which conclusions can be drawn and healthcare decisions made.

On April 15, 2015 at 1pm ET (time zone converter) the #hcsmca community will explore how to share health evidence in ways that are accessible, meaningful and prioritized to patient needs.

  • T1 Are you aware of Cochrane (or similar) systematic reviews? How useful/relevant are they to you?
  • T2a How might researchers design protocols to ensure that outcomes are prioritized to patient needs?
  • T2b Does social media have a role to play in this?
  • T3 How might we use social media to communicate and disseminate research so that findings are more accessible, timely, and meaningful for the public?
  • T4 How do we ensure that people know why and how evidence should be used to inform their health decision making?
4 Comments leave one →
  1. The Accidental Amazon permalink
    April 8, 2015 2:11 pm

    Amen, Colleen! The fact that “we still need context and expertise” sometimes gets lost in the discussion of what role our access to social media and information should play in our healthcare. I have a medical appointment myself next week, so I don’t know if I’ll be able to participate in this, but it will be very informative, I’m sure. Kathi

    Liked by 1 person

    • April 9, 2015 11:48 am

      Hi Kathi, your comments are already helpful. I know you may not be able to join the chat, but I would still value your thoughts outside of the chat. Marie


  2. Editor permalink
    April 9, 2015 11:43 am

    Reblogged this on Journeying Beyond Breast Cancer and commented:
    I will be moderating the next #HCSMCA tweet chat on April 15. Please do join me next week.


  3. Pat permalink
    April 9, 2015 12:53 pm

    Marie, needing “context and expertise to interpret the research” on mammography is indeed crucial.

    The biggest context most of the general public (which also means most women) isn’t aware of is that modern medicine, including medical research, is highly commercialized. Mammography is a fitting example of a procedure pushed primarily by money interests instead of science.

    The two most thorough, extensive, and reliable accounts of the non-science of mammography, the large body of relevant anti-mammogram evidence that’s been ignored by the mammogram industry, and the huge influence of big money and politics on the dominant status of mass screening read “Mammography Screening: Truth, Lies and Controversy” by Peter Gotzsche and “The Mammogram Myth” by Rolf Hefti – more at TheMammogramMyth dot com

    IF women (and men) at large were to scrutinize the mammogram data above and beyond the information of the mammogram industry (eg American Cancer Society, National Cancer Institute, Komen), they’d also find that it is almost exclusively the big profiteers of the test (eg radiologists, oncologists, medical trade associations, breast cancer “charities” etc) who promote the mass use of the test and that most pro-mammogram “research” is conducted by people with massive vested interests tied to the mammogram industry. This irrefutable fact is proof that money rules, although that prime motive is carefully hidden underneath the label of “science” ….

    Liked by 1 person

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