1. Information provision and decision aids for diagnosis in clinical pathways David Keane Dr Michael Craven Dr Sarah Sharples Information provision and decision aids for diagnosis in clinical pathways Multidisciplinary Assessment of Technology Centre for Healthcare

2. Information provision and decision aids for diagnosis in clinical pathways Contents Research questions Stages of information provision for diagnosis in clinical pathways Pre-diagnosis stage Investigating-diagnosis stage Post-diagnosis stage New media and other presentation technologies Conclusion Vignette study

3. Information provision and decision aids for diagnosis in clinical pathways Research questions User behaviours towards different types of diagnostic medical devices Information provision for diagnosis in clinical pathways Vignette study: What information do participants want? The level of detail of such information? When do they want to receive information? What medium do they want to receive the information in? Is there a relationship between the nature of a diagnostic procedure, information provided and participants’ attitudes towards that diagnostic procedure?

4. Information provision and decision aids for diagnosis in clinical pathways procedure performed decision made investigative procedure(s) test(s) ? pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage Stages of information provision for diagnosis in clinical pathways A clinical pathway details different stages based around a condition from being suspected through to diagnosis, prognosis and possible interventions such as surgical procedures or therapies The diagnostic stage of the clinical pathway is the focus of the research into information provision

5. Information provision and decision aids for diagnosis in clinical pathways Decision aids are often used Inform patients about their diagnostic options Promote engagement with clinicians in the decision-making process Used when ‘preference sensitive’ decisions have to be made that will depend largely on a patient’s values and opinion pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed

6. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Gastroenterological symptoms ColonoscopyVirtual colonoscopy

7. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Gastroenterological symptoms von Wagner et al. (2009) 65% preferred virtual colonoscopy 12% preferred colonoscopy 23% declared no preference Participants sufficiently informed 80% preferred colonoscopy 8% preferred virtual colonoscopy 12% declared no preference Participants minimally informed ColonoscopyVirtual colonoscopy Diagnostic context

8. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Framing The same data that when ‘presented or framed in different ways, will elicit different responses and conclusions even in the same person’ Raffle and Gray (2007, page 223) 95 patients out of 100 will have no complications Risk 5 patients out of 100 will have complications

9. Information provision and decision aids for diagnosis in clinical pathways Format Edwards (2004) pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed ‘The procedure is a reliable diagnostic tool and the chance of side-effects is very small’ 100 5 ‘You wear a gown and you will be lying still for a long period of time, which can be uncomfortable but it’s a straightforward procedure and you can carry on with your day pretty much as normal afterwards’ Descriptive Numerical Graphical Patient narratives of their experiences

10. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Information that is provided to patients at the time of a diagnostic procedure Reassure and make patients feel as comfortable as possible Hermann (2002) Patient leaflet for thyroidectomy _________________ _________________ _________________ _________________ _____________ _________________ _________________ _________________ _________________ _________ _________________ _________________ _________________ _________________ ___ _________________ _________________ _________________ _________ _________________ _________________ _________________ _____________ _________________ _________________ _________________ _________________ _________________ _________________ ________ _________________ _________________ _________________ _________________ __________ _________________ _________________ _________________ _________________ ________________

11. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Information that is provided to patients at the time of an investigative procedure or test Reassure and make patients feel as comfortable as possible Information about surgical procedure and its effect Cognitive coping technique General information about the ward Ridgeway and Mathews (1982) Enhanced knowledge and usefulness ratings Most effect on indices of recovery

12. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Trust ‘[F]eeling comfortable with the technology used’ and ‘belief that the technology [is] effective and [will] not fail’ Montague (2010) Trust that a patient may have in medical technology that an investigative procedure or test will use may also influence their trust in: clinicians and other healthcare professionals involved in an investigative procedure or test healthcare provider where an investigative procedure or test is taking place investigative procedure outcome or test result

13. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed An outcome from an investigative procedure or a result from a test Patient notification Information on what happens next Positive diagnosis Negative diagnosis Inconclusive

14. Information provision and decision aids for diagnosis in clinical pathways Patient notification permits a health behavioural change in patients No notification, no change in health behaviour Patients satisfied of being informed of their results (whether normal or abnormal) Only statistically significant comparison was the difference in satisfaction between the group that was notified and the group that was not Meza and Webster (2000) pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed

15. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed New media and other presentation technologies

16. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed New media and other presentation technologies

17. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed New media and other presentation technologies Internet Bring advice and support patients without the need to travel Benefit patients who find it difficult to communicate face to face with clinicians

18. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Conclusion Transference of information Benefits patients, GPs, clinicians and other healthcare professionals Healthcare providers providing resources for an improved healthcare service with the intention of costs benefits Choice Control Increasing consumeristic roles patients have Flexibility Clinical freedom

19. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Vignette study Three sets of symptoms Three different types of diagnostic procedures 1)The effects of different types of diagnostic procedures, and the combined effects of different symptoms and types of diagnostic procedures on participants 2)Information provision for diagnosis in the pre- and post-diagnosis stages What information do participants want? The level of detail of such information? When do they want to receive information? What medium do they want to receive the information in? Is there a relationship between the nature of a diagnostic procedure, information provided and participants’ attitudes towards that diagnostic procedure?

20. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Vignette study Three conditions Three types of diagnostic procedures Blood test Imaging procedure Invasive procedure GASTROENTEROLOGICALCORONARYMUSCULOSKELETAL

21. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Vignette study Three conditions Three types of diagnostic procedures Blood test Imaging procedure Invasive procedure GASTROENTEROLOGICALCORONARYMUSCULOSKELETAL

22. Information provision and decision aids for diagnosis in clinical pathways pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Vignette study Three conditions Three types of diagnostic procedures Blood test Imaging procedure Invasive procedure GASTROENTEROLOGICALCORONARYMUSCULOSKELETAL

23. Information provision and decision aids for diagnosis in clinical pathways The vignette study has not incorporated any elements of information provision in the investigating-diagnosis stage However, this stage of information provision would benefit from further research and it may be an area that we focus on in further studies This will depend on the outcome of the vignette study and where significant findings lead pre-diagnosis stage GP specialist clinician investigating- diagnosis stage post-diagnosis stage decision made procedure performed Vignette study

24. Information provision and decision aids for diagnosis in clinical pathways Acknowledgements This work has been funded by the MATCH Programme (EPSRC Grant GR/S29874/01). The views expressed, however, are entirely those of the authors. End of the presentation Thank-you David Keane: eexdk1@nottingham.ac.ukeexdk1@nottingham.ac.uk