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Ensuring Value in Research: Consumer Perspectives & Some Missing Pieces

Hilda Bastian
November 27, 2018

Ensuring Value in Research: Consumer Perspectives & Some Missing Pieces

Hilda Bastian

November 27, 2018


  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
  2. Disclosures •  No financial conflicts of interest

  3. None
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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
  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
  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)
  8. It’s not enough to mean well: effects matter

  9. None
  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
  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)”
  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
  13. Bastian et al (2010). [German] https://www.egms.de/static/en/meetings/ebm2010/10ebm065.shtml Rights & “patient journey”

  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

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

    (2014). DOI: 10.1371/journal.pmed.1001651
  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
  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, &

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

  27. None
  28. We need to invest seriously in multiple levels of regularly

    updated, evidence-based patient information & its popularisation
  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/

  30. —  We need to communicate results in ways that can

    be used by non-specialists
  31. Values & Integrity Research & Analytical Skills Communication Skills &

    Literacies Cognitive Skills
  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
  33. Thanks!