Hilda Bastian, Pubmed Health, NCBI (National Library of Medicine, NIH)

1. PubMed Health and consumer summaries of systematic reviews Hilda Bastian Consumers United for Evidence-based Healthcare (CUE) 2011 Annual General Meeting, Washington DC 12 August 2011

2. 3 topics today Context – PubMed Health and review summaries What is a good consumer summary of a systematic review? PubMed Health’s focus and development

3. Context: PubMed Health Currently largely a consumer medical encyclopedia Re-development: becoming a website specializing in clinical effectiveness research

4. Context: summaries “Knowledge translation”: Patient info based on reviews (eg AHRQ) OR Consumer summaries of reviews (eg Cochrane) Some do both (eg Informed Health Online from IQWiG in Germany)

5. Elements in common Aim to be plain language Include contextual information which may not be in the review (Relatively) short

6. Cochrane plain language summaries (PLS) Free access Often written by, and/or reviewed by, consumers 2 components: title and text Highly variable content, style and quality

7. A good summary: content Fidelity to the review when reporting on it Covers basic issues people need to know Certainty of statements corresponds to certainty of evidence: When is it a true effect? How strong is the evidence for each effect?

8. A good summary: style Patient-centered (eg “use” not “management”) Non-directive and neutral (avoid “should”) Well-crafted (logical order, interesting, jargon explained) Readable (and for short summaries, easy to scan)

9. Readability Short words, short sentences, short paragraphs SMOG calculator can help:http://en.wikipedia.org/wiki/Smog_calculator Rule of thumb: “Good” for a review summary is roughly the SMOG rating for Time magazine (12*) but similar to NY Times is probably acceptable (around 13 to 15**) * High school graduate ** Some college

10. Cochrane PLS with SMOG of less than 12 Steroids applied directly to polyps in the nose in people with cystic fibrosis People with cystic fibrosis often have polyps in their nose which can cause discharge from the nose and block it up. We know that people with cystic fibrosis who have polyps in their nose also have more of some types of bacteria in their lungs. This can lead to serious chest complications later on. If we treat the polyps effectively at an early stage, this may prevent such chest complications. Steroid sprays or drops are often applied directly to polyps in the nose. These drugs have some minor side effects but have been shown to be useful in patients who do not have cystic fibrosis. Our search found one randomised controlled trial that investigated the use of directly applied steroids in 46 people with cystic fibrosis who had polyps in their nose. Twenty-two participants received the drug and 24 received a placebo only. The results show that patients did not find the treatment made a difference to their symptoms. However, the authors of this review found that the treatment does reduce the size of the polyps and does not cause significant side effects. The small number of participants in this study means the calculations and results should be regarded with some caution. More studies are needed to confirm the findings. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008253.pub2/abstract;jsessionid=DBBB8C76F1AD0C5F27B537262199B488.d01t01

11. Improving Cochrane summaries: content Fidelity to the review’s findings* Certainty of statements when effects are from single or few trials within larger reviews Context & explanation: usually need at least 300 words * Recent Cochrane analysis found 28% discordancehttp://www.editorial-unit.cochrane.org/sites/editorial-unit.cochrane.org/files/uploads/Abstract%20audit%20report.pdf

12. Improving Cochrane summaries: style Readability – needs improvement (but too plain English can be local colloquialism) Paragraph breaks Patient-centered language

13. PubMed Health: focus and development Changing focus to systematic reviews, summaries of reviews, and consumer information based on reviews (by Fall 2011) Growing list of invited contributors, including Cochrane, AHRQ, IQWiG, NICE and more

14. Educational resources Coming soon: online books (egTesting Treatments) and more

15. Thanks! http://www.ncbi.nlm.nih.gov/pubmedhealth/