Investigation: IT & Data Sharing for PCM

Final report: PCM Report – IT & Data sharing

Investigator:   Michele Masucci

Background

This investigation is focused on collecting information surveying the conditions for translational cancer research from an informatics perspective. Which are the conditions for generating, collecting, managing and sharing research data of different kinds and from different sources within the cancer field? What IT systems are at place and what are their characteristics? What kinds of developments and future scenarios for the capacity to collect and curate high quality research data are there at the local and international context?

Objectives and method

A first phase in the investigation will be an intelligence report that includes a mapping of a number of leading cancer centers an their solutions for cancer research data. A theoretical model based on recent scientific publications on the topic of translational informatics will also be a significant component. The second phase of the investigation covers interviews and a survey with stakeholder representatives and decision makers in the Stockholm region including the Karolinska Institutet, Karolinska University Hospital, SciLifeLab, Stockholm Medical Biobank and other relevant actors in the cancer research community. An important element of this’ll be to learn about the perceived needs from the end users and providers of research data and how this resonates with decision makers. Furthermore the investigation will test the reception to existing technologies and solutions that could be implemented and resolve identified bottle necks.

The investigation will be compiled in the form of a report that will give an account of the collected information as fellas proposing a number of possible measures to be taken on the short and long term. The report will be distributed and available though the PCM webpage.