Ensuring Value in Research: Consumer Perspectives & Some Missing Pieces

Transcript

1. Ensuring Value in Research:
   Consumer Perspectives &
   Some Missing Pieces
   7th Annual NHMRC Symposium on
   Research Translation
   University of Sydney
   27 November 2018
   Hilda Bastian
   @hildabast
   hildabastian.net
   

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2. Disclosures
   •  No financial conflicts of interest
   

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5. Research waste model:
   Clinicians & patients not involved in setting research
   agendas.
   Chalmers & Glasziou (2009). DOI: 10.1016/
   S0140-6736(09)60329-9
   

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6. Ensuring Value in Research (EViR)
   Funders’ Forum model:
   Principle 1:
   Health-related research agendas and priorities should
   be set with the meaningful involvement of those who
   will use and be affected by health-related research.
   EViR: https://sites.google.com/view/evir-funders-forum/guiding-principles?authuser=0
   

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7. “The number of studies on patient and public
   involvement in HTA has increased in recent
   years… However, studies are still needed to
   assess the effectiveness of different strategies
   for involving patients and the public in HTA”.
   Tantchou et al (2018). DOI: 10.1017/S0266462317002744
   (Conference presentation of an update of a systematic review)
   

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8. It’s not enough to mean well:
   effects matter
   

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10. Could clinical experts predict
    which new anticancer drugs
    will impact care?
    “As the experts missed 37% of drugs that are in need of
    guidance, they should not be relied upon to select drugs relevant
    for evaluation”.
    Douw & Vondeling (2007). DOI: 10.1016/j.socscimed.2006.08.022
    

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11. Lauer et al (2015). DOI: 10.1161/CIRCRESAHA.115.306830
    Do grant peer reviewers’
    ratings correlate with
    grant productivity?
    [30 years of data] “discrimination was poor (area
    under receiver operating characteristic curve [ROC],
    0.52; 95% confidence interval, 0.51-0.53)”
    

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12. Methods needed…
    •  For evaluating effectiveness
    •  How to involve – and be
    involved – effectively
    … Involvement not enough
    Hansen et al (2012). DOI: 10.2165/11539880-000000000-00000
    Bastian (2011). DOI: 10.1017/S0266462311000547
    

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13. Bastian et al (2010). [German]
    https://www.egms.de/static/en/meetings/ebm2010/10ebm065.shtml
    Rights & “patient journey” approaches
    

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14. “The idealized expert-
    generated, one-way,
    authoritative reign of
    science is over.”
    Sobo et al (2016)
    DOI: 10.1080/01459740.2016.1145219
    

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16. “Top-down” dissemination of
    research isn’t the end of the line
    

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17. “Research Waste” model
    Chalmers & Glasziou (2009). DOI: 10.1016/S0140-6736(09)60329-9
    Glasziou (2014). DOI: 10.1371/journal.pmed.1001651
    

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18. Ensuring Value in Research (EViR)
    Funders’ Forum model
    Principle 10:
    Research knowledge that can lead to benefit
    should be effectively disseminated to end users.
    Where appropriate, the usage of new
    knowledge should be supported and facilitated.
    EViR: https://sites.google.com/view/evir-funders-forum/guiding-principles?authuser=0
    

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19. •  Strengthen post-publication culture
    •  Consequences for non-response to important
    questions & criticism
    Südhof (2016). DOI: 10.1371/journal.pbio.1002547
    Bastian (2014). DOI: 10.1371/journal.pmed.1001772
    

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24. Methods research / meta-
    research should be done,
    funded, & used
    

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25. Example 1: Decision aids & data
    visualisation
    Schmacke et al (2008) [German]
    http://www.akg.uni-bremen.de/pages/
    arbeitspapierBeschreibung.php%3FID=27&SPRACHE=DE.html
    (Hirschberg et al (2013). DOI: 10.1186/1472-6963-13-405)
    

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26. Stacey et a. 2011 version of the Cochrane review.
    

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28. We need to invest seriously in
    multiple levels of regularly updated,
    evidence-based patient information
    & its popularisation
    

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29. Example 2: The NNT
    Bastian (2015) https://blogs.plos.org/absolutely-maybe/2015/03/09/mind-your-
    ps-rrs-and-nnts-on-good-statistics-behavior/
    

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30. —  We need to communicate results in ways that
    can be used by non-specialists
    

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31. Values &
    Integrity
    Research &
    Analytical Skills
    Communication
    Skills &
    Literacies
    Cognitive Skills
    

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32. “[We] have made far more
    progress in cataloguing
    cognitive biases than in
    finding ways to correct
    them.”
    Lilienfield et al (2009).
    DOI: 10.1111/j.1745-6924.2009.01144.x
    

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33. Thanks!
    

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