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UK NSC stakeholder event 2017 Dr Louise Bryant presentation
- 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. 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. 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. “.. 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. 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 Facilitating informed choices in screening
- 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 Facilitating informed choices in screening “There should be an effective intervention”
- 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 Facilitating informed choices in screening Ability to use health information to make decisions
- 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. 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
- 13. 13 Facilitating informed choices in screening
- 14. 14 Facilitating informed choices in screening
- 15. 15 Facilitating informed choices in screening
- 16. 16 Facilitating informed choices in screening
- 17. Understanding harms to the individual Further invasive procedures, e.g. colonoscopy Over treatment Psychological impacts Anxiety 17 Facilitating informed choices in screening
- 18. Difficult decisions “It’s a **** decision” 18 Facilitating informed choices in screening
- 19. The screening environment 19 Facilitating informed choices in screening
- 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. Time pressure 21 Facilitating informed choices in screening
- 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. Technology 23 Facilitating informed choices in screening
- 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. 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. 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. 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
Editor's Notes
- The UK NSC is leading on getting approval from 4 countries for an agreed definition of IC and an agreed process for developing materials This has been put out for general consultation which closed on 13th November.
- Design or produce (something) to meet someone's individual requirements.
- Breast screening does save lives (1,300 per year according to the Marmot Review). But for some women, they may be diagnosed with a cancer, leading to treatment, when the cancer may never have become life-threatening. See https://publichealthmatters.blog.gov.uk/2014/10/06/breast-screening-a-personal-choice/ And research on women’s views of over-diagnosis
- Not everyone sees screening as a ‘good thing’, or all screening programmes as equal. From: How do we help people decide if screening is the right choice for them? Posted by: Anne Mackie, Posted on: 3 August 2015 -
- Screening programmes also differ: “The group agreed that information provision would necessarily differ between those antenatal screening programmes that were presented as a choice (such as fetal anomaly screening) and other programmes where the benefits clearly outweigh the harms (such as screening for infectious diseases). The process will make this distinction clear.” PHE blog Jo H https://phescreening.blog.gov.uk/2017/02/09/new-uk-wide-public-information-group-getting-to-work/
- The idea then is that we have a central database of all UK wide publications and organise our reviews and new developments in a more cohesive way; sharing and not reinventing the wheel and all using the same stakeholder engagement
- Guidance for the development production and review of information to support all UK population screening programmes Engaging with users: surveys, focus groups and consultation
- Ability to understand information in the form of diagrams, plans, charts, graphs
- 2016
- Professionals may underestimate people's health literacy needs, this may be because needs remain hidden as people attempt to hide them or it could be because people are reluctant to admit that they haven't understood information what has been explained. Everyone can be at risk of poor health literacy, particularly when hearing new or distressing information or when overwhelmed by anxiety or worry. The importance of verbal information – using Teach-back as a simple example
- Health literacy place and NHS Scotland Key – not making person feel they are being tested
- Story of screening for CPCs , false positive Two things learned: Never underestimate intensity of positive screen The importance of programmes that have been considered in terms of benefits outweighing harms Link to NIPT and anxiety about having a positive result if you think the test in over 99% accurate
- Now on to my final area – the context of the screening makes a difference to how it is perceived as a choice and what choice means
- White coat syndrome From research in prenatal screening: Ambience of the clinical environment & power Psychological impact of environment Tensions Women/providers (understanding, time pressure, skills) Providers – fear of litigation Decision making approaches Directive, ‘hands off’, shared, autonomous Whatever is offered is best – offers as opportunities – humans don’t like to turn down opportunities, especially if health
- Anticipated decision regret
- NHS staff are under time pressure. In UK less than 5 minutes to discuss antenatal screening For most programmes – no one-to-one discussions
- Discordance between programme goal (non-directiveness) & service delivery goals Procedures can sometimes be the enemy of informed choice - its
- Uptake of u/s compared with screening for DS Personification of the fetus - didn’t want any other screening but couldn’t miss the opportunity of u/s Each time there is a new technology – and that includes simple things like a kit to take a stool sample – need to think again about how that changes the context
- NIPT for example – DNA from the baby – very attractive, 99% accurate very attractive Both these statements are misleading
- Remind us of what the screening programmes trying to achieve
- A definition of IC is useful and it helps set out the necessary basics for helping people make decisions. It is not possible to know whether someone has made the choice that ultimately is right for them. It is possible though to help them feel they made a good enough decision at that time, given the circumstances. It is possible to create an environment that helps people see an offer as a decision to be made, not just an opportunity not be to be missed. An informed choice is not a ‘one time thing’ something sorted by leaflets or even excellent verbal communication. For some people the decision is a complex process – and the processing goes on after the decision or choice is made, in some cases for ever. It is also an ongoing issue screening programmes. “ Anne Mackie has said “The concept of informed choice in health screening is a constantly evolving process” It isn’t ‘all sorted’ Aspects of informed choice should be regularly assessed and reviewed, as they are within the NSC. Conversations with stakeholders are essential to this process Thank you