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Caught between blindness and a heart attack? Or how research reporting can keep an informed patient awake at night

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Page 1: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration

Caught between blindness

and a heart attack?

Or how research reporting can keep

an informed patient awake at night

Page 2: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 3: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 4: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 5: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 6: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 7: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 8: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 9: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 10: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 11: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 12: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 13: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 14: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 15: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 16: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration

How can patients add value?

Engage physicians, patients from the onset

What we seek to answer with the study

What we want to ask

Discuss results, how to report them

Proactive knowledge transfer

Standard procedure

Built into calls for proposals, funding

Page 17: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration

How can academics add value?

Improve quality of conduct (e.g. questionnaires)

Address communication implications from the get-go.Study limitations

Causality, associations

Interpretation (expert vs. expert, lay vs. expert)

Contradictory evidence

Assess results in the context of existing knowledge.

Reporting does not end with publication

Page 18: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 19: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration

Mediations: key target

Take into account all reporting mediations

Health professionals

Public health communicators

Patient groups, fora, bloggers

Social media

Engage in constructive dialogue

Page 20: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration

REPORTING

Patients

Interested

lay audiences

Health professionals

Peer reviewers

Editors

Journalists, portals,

bloggers

Page 21: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration

Context: patient-centred?

Patient centred vs. health

system/provider/researcher centred

Patient input built into research

Read user comments on news articles, blogs,

online fora

Educate the user? Educate the researcher?

Learn to live with user needs, logic, and use of

evidence

Page 22: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration
Page 23: Caught between blindness and a heart attack? · regularly to reduce their risk of heart attacks and strokes are significantly more likely to suffer from age-related macular degeneration