Assessing the Quality of Consumer Health Information 3 rd National Health Care Complaints Conference Melbourne 29 th &

1. Assessing the Quality of Consumer Health Information3rd National Health Care Complaints ConferenceMelbourne29th & 30th March 2001 Centre for Clinical Effectiveness in collaboration with the Health Issues Centre Kay Currie

2. Information provision & complaints • Information provision is a key component of communication • Breakdown in communication • Is a major cause of patient complaints • Accounts for 30% of complaints received by HSC (Annual Report 1999/2000) • Is a factor in decision to seek legal redress • Lack of information impacts on outcomes

3. "It's surprising how we doctors have failed to take the opportunity to learn in a systematic way from those we serve. Perhaps we've been too arrogant to bother. It's amazing what we at the Picker Institute have been learning from patients and how [taking] simple steps in response can make an enormous difference for our patients." Professor Tom Delbanco, Chairman of the Picker Institute.

4. And yet…… • Information provision is often an add-on • Biased • Does not promote participation in decision making • Consumers are only infrequently involved in the development • Is duplicated across the health system

5. Overview • Project outline • Outcomes • Policy implications • Where to now?

6. The project • Acknowledgements • Reviewed printed consumer health information on 6 conditions • Sought to identify what consumers valued • What clinicians valued • Assessed the evidence-based content

7. How? • Consumers • Clinicians • Evidence • Publishers

8. Outcomes • Well-Written Health Information:A Guide • Published findings on 6 conditions • Training workshops

9. “If you don’t know anything it is difficult to know what to ask.” (Rural focus group)

10. Policy implications • Strategic planning • Information pathways • NESB and cultural issues • Sources of information • Choice • Consumer participation • Resources

11. “Patients are educated ……customers and consequently much more demanding. Doctors have found ways to combat this menace: • acquire an aura of infinite wisdom and philosophical patience; • listen for 30 seconds and talk for 10 minutes; • pepper speech with incomprehensible medical terms to show off patients' ignorance; • talk in imperatives; • at any sign of rebellion, look stunned, or, in the case of a professor, look ambivalent.” Ramy Daoud, senior house officer. Police Hospital, 13511 Cairo, Egypt ruse@softhome.net BMJ 1999;319:720-721 ( 18 September )

12. Future directions • State level independent organisation • Staffed by clinicians • Rated, graded information • Evidence based resource • Standardised templates • Training for consumers & providers • In information provision • Development of consumer information • Evaluation of consumer information

13. Conclusion Information provision is: • NOT an optional extra • IS part of the continuum of care • IS a democratic right • NEEDS determined by the consumer • MUST be more than rhetoric

14. “He actually turned the screen around and showed me the stones on the ultrasound. I could see it all so clearly and I felt that he was involving me in what was happening to me” Metropolitan cholecystectomy focus group