EnMESHDEVALUATION OF TOOLS AND METHODS FOR

SHARING DATA

Prof Madeleine Murtagh, University of Bristol

Evaluation of tools and MEthods for Sharing DataThe EnMESHD evaluation assessed the implementation and applicability of BioSHaRE tools and methods (‘tools’ for short)

24 month multi-stage evaluation of the main BioSHaRE tools

Evaluation process

1. Qualitative interviews with BioSHaRE members in 2013 (n= 21)2. Qualitative interviews with developers, users, biobanks in 2015 (n=21)3. Survey (qualitative & quantitative) with the BioSHaRE community (n=35)4. TODAY! ECOUTER engagement exercise to ask:

‘BioSHaRE Tools: Where to now?’

EnMESHD Evaluation of tools and MEthods for Sharing Data

Summary: BioSHaRE tools are a successful first step/pilot in efforts to analyse biobank data collaborativelyDeveloper concerns

Users don’t always allow for the fact that the tools are in development and are therefore not finished productsResultant risks including high user expectations

cf. fully developed commercialised software

Pressure for tools that are “very simple” to use = unintended consequences eg. analyses that are not scientifically valid – “you still need to understand the basics”

Developer and User concernsThere are still challenges

Technical challengesA need for more user support/documentationProblems gaining data access from biobanks Issues of trust in the research process

EnMESHD Key findings of the evaluation

Employing COnceptUal schema for policyand Translation Engagement in Research

Mindmap of the EnMESD findings

ECOUTER is both a tool and a methodology for stakeholder engagement using:

interactive software mind mapping in combination with the existing evidence basequalitative analysis of mind map outputs to produce a conceptual schema which maps ideas, relationships, entities and functions

ECOUTER brings engagement to the stakeholder instead of taking the stakeholder to the engagementECOUTER Steps

1. Engagement and knowledge exchange (‘mind mapping’)2. Analysis/synthesis3. Concept schema development4. Feedback and refinement

Employing COnceptUal schema for policyand Translation Engagement in Researchwww.bristol.ac.uk/ecouter

Conceptual Schema example

Output from BioSHaRE P3G ECOUTERData linkage and trust

Employing COnceptUal schema for policyand Translation Engagement in Research

Mindmap of the EnMESD findings

Thank you!

Please take part in the ECOUTER today during the breaks

‘BioSHaRE Tools: Where to now?’

EnMESHD Evaluation of tools and MEthods for Sharing Data

Acknowledgements

EnMESHD: Dr Michaela Fay, Dr Joel Minion and all the participantsECOUTER: Dr Olly Butters, Lizzy Dann, Dr Joel Minion, Barnaby Murtagh, Cynthia Ochieng, Dr Stephanie Roberts, Dr Andrew Turner, Dr Becca Wilson and all of you!The research leading to these results has received funding from the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement n° 261433 (Biobank Standardisation and Harmonisation for Research Excellence in the European Union - BioSHaRE-EU)