6/8/17. How to make sense of cancer headlines Lisa Rezende, PhD Julie Huynh, MS. Conflicts. HBOC Research Moves Rapidly

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1 How to make sense of cancer headlines Lisa Rezende, PhD Julie Huynh, MS Conflicts ² Lisa Rezende, PhD- None to disclose ² Julie Huynh, MS- None to disclose HBOC Research Moves Rapidly Where can young breast cancer survivors turn to for reliable information? 1

2 Where Do Media Reports Come From? Each Story Has Many Stakeholders, but They Have Different Needs ² What are the needs and motivations of ² The researchers ² The university or company where they work ² The funding agency ² The conference or journal where the report was published ² The media ² The patients Common Errors in Health Reporting ² According to a 2009 survey of 500 health related articles found ~2/3 had errors or flaws including: ² Incorrect information on the prevalence of the disorder ² Exaggerating symptoms ² No discussion of side effects or downside of a treatment ² No discussion of alternatives ² 44% of the reporters interviewed said their organization ran stories based primarily on press releases survival_of_the_wrongest.php 2

3 Media on hereditary breast cancer research: friend or foe? ² Catchy headlines grab our attention regularly but can we trust everything we read? ² There are often inaccuracies or exaggerations found in media coverage of scientific research. XRAYS: Making Sense of Cancer Headlines How does XRAYS help patients put research into context? Original Research Study Media coverage of research 3

4 How does XRAYS help patients put research into context? 1. Explaining statistics 2. Study quality 3. Clinical relevance 4. Media coverage Statistics in media reports can be misleading Statistical Concepts Often Mentioned in HBOC Reports Media report says mastectomy rates 'nearly double.' Absolute increase from the study was from 3% to 6%. 4

5 Take home point: Make Sure You Know if the Risk Described is Relative or Absolute Media reports use the term 'statistically significant' often. What does it actually mean? In statistics, data is significant if it is likely that the data measured did not occur by chance. Statistically significant results are not necessarily Important Interesting Going to make a significant difference to your health Example of statistical significance All had a lumpectomy and radiation. After 10 years, 93.5 percent of those taking anastrozole remained cancer-free, compared to 89.2 percent of those taking tamoxifen, a difference described as statistically significant. Pittsburgh Post Gazette May 30 th,

6 How does XRAYS help patients put research into context? 1. Explaining statistics 2. Study quality 3. Clinical relevance 4. Media coverage Who are the study participants? What type of study is it and how was it done? 6

7 How does XRAYS help patients put research into context? 1. Explaining statistics 2. Study quality 3. Clinical relevance 4. Media coverage Is All Research Reported by the Media Important? Does All Important Research Get Reported? Types of HBOC Research Studies Reported by the Media Basic Research Clinical Research 7

8 Basic Research Helps Us Understand the Underlying Biology Basic Research Basic research is a critical step in the research process, but the effects (if any) on patient care are likely many years away. Clinical Research is More Directly Related to Patient Care But Not All Research Results Will Change Treatment ² Media reports on ² All phases of research from preliminary studies to phase III clinical trials ² Studies of different designs Clinical Research How does XRAYS help patients put research into context? 8

9 How does XRAYS help patients put research into context? 1. Explaining statistics 2. Study quality 3. Clinical relevance 4. Media coverage Where did all of this research new come from? First, Studies are Designed from Observations ² Example: ² Some neurological diseases are associated with defects in repairing DNA ² BRCA1 gene is involved in DNA repair ² Researcher asks: Is the BRCA1 gene involved in neurological disease? The Results Get Presented at a Conference and/or a Paper Gets Published 9

10 The Institution and/or Other Interested Parties Put Out Press Releases The Media Picks Up the Research from the Press Release, Conference or Published Paper Social Media Spreads the Word 10

11 Peer Review ² Conference reports are breaking news but while selected for inclusion in the conference, they have not been thoroughly vetted ² Papers in scholarly journals have been peer reviewed i.e. all data has been examined by outside experts in the field A Publication is Not the Last Word on the Subject ² Research is iterative process- one study leads to new questions, results must be replicated, more research is often needed ² Animal studies are a start, but never the final word in human disease What to Look for in a Media Report ² The reporter s name attached to report ² The headline matches the findings discussed ² At least two different people are quoted and at least one of those people was not involved in the research being described ² A description of how close this is to becoming a new treatment or guideline ² How the new research fits into what is already known 11

12 How does XRAYS help patients put research into context? XRAYS: Closer Look XRAYS takes all of this information and provides readers with expert reviewed summaries, research, and media ratings. So What Did XRAYS Say About BRCA1 and Alzheimer s Disease? 12

13 How Did the Media Do? XRAYS: How YOU can be involved 13