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Date(s) - 12/06/2014
9:30 am - 4:00 pm


Category(ies) No Categories

This workshop aims to give researchers and data analysts a better understanding of the legislation and requirements around using patient or volunteer data in research and to highlight some of the sources of research data within KCL / IoP.

If you would like to attend, please sign up on Eventbrite


9:30: Coffee

10am: Intro

10:10am Workshop on existing data practises

We are currently thinking about implementing a better system for storing, annotating, sharing and archiving research data and we would like to get a better idea of how people are interacting with their research data at the moment and how this could be improved in the future.

Participants will be split into small groups and asked to write some life stories of datasets from their own experience. This might include information about:

  • How the dataset is created
  • Where the dataset is stored and where it is copied or moved to throughout its life
  • How large the dataset is
  • How frequently the dataset is accessed
  • How many people are allowed access to the dataset, how is this controlled?
  • What other datasets need to be linked to this one?
  • Whether the dataset is published and if so, where?
  • Whether other researchers can request access, if so how

10:40 Data protection, security, ethics, consent

10:40-11:00 Anne Cameron – An intro to the Data Protection Act for researchers and how to handle breaches

11:00-11:20 Murat Soncul – Governance and Ethics when using clinical data for research

11:20-11:40 Cheryl Gillett – Human Tissue Act, biobanking

11:40-12:00 Veronica Howe – Research Data Management at KCL

12:00 Lunch

1:00 Available data resources and services:

1:00-1:20 Ryan Little – Clinical Data Linkage Service

1:20-1:40 Cerisse Gunasinghe – Bioresource

1:40-2:00 Matthew Broadbent – CRIS

2:00-2:20 TBC

2:20: Coffee

2:40: Workshop to capture existing consent forms / practices

We want to be able to query how stored and shared datasets can be used. Even within KCL there are a range of consent forms used. If we want to create cohorts or link datasets across institutions, we really need a standard way of describing what we can or can’t do with them and who can access them. This will also be helpful for implementing appropriate access controls and auditing mechanisms.

Individual projects have their own consent form requirements, so a single standard form is unlikely to be viable. Instead, we hope to define a core set of consents that data publishers can then map to their own consent forms. The aim of this workshop is to draft this set of consents. Participants are asked to bring along copies of any consent forms they use.

3:20: Coffee, Workshop Round-up, Close.

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