Access to research results for decision making

This session is linked to Plenary 4: EVIDENCE IN A POST-TRUTH WORLD: The evidence, ethos and pathos. How scientists can engage, and influence the public, press and politicians

The current 2013 Declaration of Helsinki states that “Every research study involving human subjects must be registered in a publicly accessible database before recruitment of the first subject.” and that “Researchers have a duty to make publicly available the results of their research .... Negative and inconclusive as well as positive results must be published or otherwise made publicly available”. Poor allocation of resources for product development and financing of available interventions, and suboptimal regulatory and public health recommendations may occur where decisions are based on only a subset of all completed clinical trials.

At the global level, there is increased recognition that policy decisions on key health care interventions (e.g. essential medicines) can be distorted if informed by selectively disclosed findings. However the evaluation of all available evidence, irrespective of their nature, is hampered: often the location and examination of all existing evidence is unsuccessful as trial registration and public disclosure of results is far from universal.

WHO and 19 organizations issued a joint statement on public disclosure of clinical trial results in Q2 2017 but progress in policies and legislation remains patchy, with compelling evidence that many clinical trials go unreported, raising major concerns for evidence-assessment processes.

During this session the following questions will be explored:

  • What steps can be taken by stakeholders in different areas to enforce universal clinical trial registration and timely public disclosure of methods and results?
  • Can clinical trial transparency and accountability frameworks be extended into pre-clinical research and post-licensure implementation research?
  • How can the value of registries be maximised for evidence assessment processes?

Elaine Beller, Bond University, Australia (15 minutes)

“Focus on sharing individual patient data distracts from other ways of improving trial transparency”

Vasee Moorthy, WHO, Geneva (15 minutes)

“No more excuses.” WHO’s vision and proposed actions to ensure registration and timely public disclosure of clinical trial summary results

Elizabeth Pienaar, PACTR, South Africa (15 minutes)

“Lessons learnt from PACTR for trials transparency in Africa”

Lisa Askie, Australia and New Zeland Clinical Trial Registry, Australia (15 minutes)

“Do we make best use of registries for evidence synthesis?”

(Discussion for 30 minutes, focused around the 3 questions)

Facilitators: 

Target audience: 

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Type of session: 

Presentations and discussion

Other contributors:

Date: 

Saturday 16 September 2017 - 14:00 to 15:30

Location: 

Plenary: 

Plenary 4: EVIDENCE IN A POST-TRUTH WORLD