The Value of Medical Research Data and its Reuse

Developing Educational Material 

Across Europe health researchers are collecting more and more information about diseases and treatments and how they impact individual patients. Often data is stored in incompatible, inaccessible systems that make it difficult or even impossible to reuse the information to improve patient outcomes. The challenges to using the data to their full value may be both practical and ethical.

Sharable, or standardised integratable data, is valuable data. In this form data is compatible with all other standardised forms of data, which subsequently enables broader and richer analysis. The challenges that stop data becoming integrateable are the non-adoption of data standards, national legislation and organisational policy and a lack of understanding of the importance to share data.

eTRIKS is looking to inform medical researchers about the value of data and to provide practical advice on making data more valuable through ethical sharing. To do this we want to bring together patients, bioinformaticians, translational researchers and software developers, to gain a broader insight into the value of data, data sharing and data reuse.

Patients, meet the data experts

Discuss the issues

Find the gaps in understanding

Contribute to the growing understanding of the value of data

We will use a play decide game to bring together experts in medical research and patients to discuss the issues affecting the value of data, and to identify the gaps in understanding. The output of the discussions will be used to widen understanding of data and its reuse, through a World Wide Web portal, and by developing educational material that will be disseminated through vectors such as clinical trial consent forms.

Play Decide

Play Decide is a discussion game that focuses on the key issues pertinent to the group that plays. It encourages a spread of actors to try and understand alternative views and aims to align those views.
The Play Decide board outlines the framework of the discussion and provides a series of positions, which the group can ultimately agree with, or disagree. Players scan the cards provided (Information, Issue and User Story) and identify the ones most interesting to them.
The information cards efficiently describe a broad range of technical points of the subject matter, allowing the group to be quickly informed on matters critical to the discussion. Even without prior knowledge, members will be able to effectively contribute to the discussion.
Once discussion points of interest are identified, the group discusses. After the discussion, the group’s views on the position points (outlined on the board) are decided. The decisions are then uploaded onto a web portal to be integrated with the views of many other discussion groups.

Review the discussion board here

Play Decide Board

Read the information cards for quick understanding of the subject matter

Information Cards

Review the issues

Issue Cards

Understand the actors

Story Cards

Contact Us

For further information about the patient input platform, please contact scottwagers@biosciconsulting.com or trevorgarrett@biosciconsulting.com

Acknowledgement 

Authors would like to acknowledge Play Decide for open access to their game framework and resources. We would also like to acknowledge the patients and patient representatives that helped shape the content of our play decide game.