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UK NSC stakeholder event 2017 Dr Louise Bryant presentation

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UK NSC stakeholder event 2017 Dr Louise Bryant presentation

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UK NSC stakeholder event 2017 Dr Louise Bryant presentation

  1. 1. Public Health England leads the NHS Screening Programmes Facilitating informed choices in screening Dr Louise Bryant, Associate Professor in Medical Psychology, University of Leeds
  2. 2. UK NSC four country definition: personalised informed choice 2 Facilitating informed choices in screening the condition being screened for the testing process benefits and harms potential outcomes “A personal decision made to accept or decline a screening test based on access to accurate, evidence-based information covering……..” “There should also be the opportunity to reflect on what the test and its results might mean to the individual”
  3. 3. Personalised informed choice: context 3 Facilitating informed choices in screening Alternative views exist on the value of screening tests Ability to use health information to make decisions is limited The screening environment matters
  4. 4. “.. all the doctors not knowing if it is malignant or not, you add them all together and you think, ‘Why bother?’1 4 Facilitating informed choices in screening “Screening mammograms are next to worthless”2 Alternative views on screening “I just want [my doctor] to say, ‘You should go, you must go ... this is where you go.’” 1
  5. 5. Unhappiness with ‘informed choice’ 5 Facilitating informed choices in screening “While you have .. targets on screening uptake you cannot truly claim to be giving people choice…you have already decided the ‘right’ decision” 3 “I'm sure the authorities look at the figures of how many women screened and think we adore the programme where in reality we are harassed and coerced into complying” (on cervical screening)3
  6. 6. 6 Facilitating informed choices in screening
  7. 7. 7 Facilitating informed choices in screening “The condition should be an important health problem as judged by its frequency and/or severity”
  8. 8. 8 Facilitating informed choices in screening “There should be an effective intervention”
  9. 9. Information development by ‘user need’ As a person being offered a screening test I need to understand the benefits and harms of having the test So that I can decide whether it is right for me to have the test or not 9 Facilitating informed choices in screening
  10. 10. 10 Facilitating informed choices in screening Ability to use health information to make decisions
  11. 11. Ability to use health information to make decisions 11 Facilitating informed choices in screening “Between 43% and 61% of English working age adults routinely do not understand health information” Jonathan Berry, NHS England
  12. 12. Health literacy, numeracy and graphicacy 12 Facilitating informed choices in screening The capacity to obtain, understand and act on…. Basic health information and services e.g. leaflets Numerical health information e.g. probability Health information in non-textual 2D formats e.g. graphs and diagrams DECISION
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  17. 17. Understanding harms to the individual Further invasive procedures, e.g. colonoscopy Over treatment Psychological impacts Anxiety 17 Facilitating informed choices in screening
  18. 18. Difficult decisions “It’s a **** decision” 18 Facilitating informed choices in screening
  19. 19. The screening environment 19 Facilitating informed choices in screening
  20. 20. 20 Facilitating informed choices in screening “The enduring human fear of what the future holds means that it is never easy to decline the promised benefits of screening. Such refusal seems to tempt fate in a disturbingly primeval way” Iona Heath, GP, 2009 BMJ4
  21. 21. Time pressure 21 Facilitating informed choices in screening
  22. 22. 22 Facilitating informed choices in screening “Due to the implementation process a decision is required immediately… therefore if there is some indecision it is more common to recommend screening and decline later” (Midwife)5
  23. 23. Technology 23 Facilitating informed choices in screening
  24. 24. Social context of NIPT 24 Facilitating informed choices in screening “Nearly 100% accurate” “100% safe” “Earlier, safe, more accurate” “Midwife says never seen one not confirmed” “NHS test pointless” “Uses the baby’s DNA” Over 99% accurate for Down’s syndrome“worth every penny”
  25. 25. Where we started… 25 Facilitating informed choices in screening the condition being screened for the testing process benefits and harms potential outcomes “A personal decision made to accept or decline a screening test based on access to accurate, evidence-based information covering……..” “There should also be the opportunity to reflect on what the test and its results might mean to the individual”
  26. 26. Key points... Alternative views exist on the value of screening tests Ability to use health information to make decisions is limited The context of the screening offer matters Informed choice is a complex process - not an outcome 26 Facilitating informed choices in screening
  27. 27. References 1 Hersch, Jolyn, et al. "Women’s views on over diagnosis in breast cancer screening: a qualitative study." Bmj 346 (2013): f158. 2 https://www.canceractive.com/cancer-active-page-link.aspx?n=1420 3 How do we help people decide if screening is the right choice for them? Anne Mackie, Posted on: 3 August 2015 4 Heath, Iona. "It is not wrong to say no." BMJ: British Medical Journal (Online) 338 (2009) 5 Ukuhor, Hyacinth O., et al. "A Framework for Describing the Influence of Service Organisation and Delivery on Participation in Fetal Anomaly Screening in England." Journal of pregnancy 2017 27 Facilitating informed choices in screening

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