Ensuring Value in Research: Consumer Perspectives & Some Missing Pieces

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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
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
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” approaches
14. “The idealized expert- generated, one-way, authoritative reign of science is over.” Sobo et al (2016) DOI: 10.1080/01459740.2016.1145219
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
24. Methods research / meta- research should be done, funded, & used
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.
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!