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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. Research waste model: Clinicians & patients not involved in setting

    research agendas. Chalmers & Glasziou (2009). DOI: 10.1016/ S0140-6736(09)60329-9
  3. 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
  4. “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)
  5. 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
  6. 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)”
  7. 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
  8. “The idealized expert- generated, one-way, authoritative reign of science is

    over.” Sobo et al (2016) DOI: 10.1080/01459740.2016.1145219
  9. 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
  10. •  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
  11. 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)
  12. We need to invest seriously in multiple levels of regularly

    updated, evidence-based patient information & its popularisation
  13. “[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