Consultation on building an e-health research infrastructure for cancer

The National Cancer Intelligence Network (NCIN) posted a consultation document on their site last week to coincide with the beginning of the National Cancer Research Institute's annual conference.

It's worth reading this in conjunction with the Department of Health document describing the new Clinical Practice Research Datalink which we blogged about a few days ago as the consultation seeks to co-ordinate its proposals with the infrastructure developments proposed by the CPRD.

In overview (taken from the Executive Summary - these are expanded upon in the main body of the document) the proposals are:

Proposal 1: A safe haven facility to enable research access to potentially identifiable data from the English cancer registration service in a secure, controlled environment. All outputs removed from the safe haven would be checked against anonymity criteria before release.

Proposal 2: A linkage service to allow combination of different datasets for use in research.

Researchers with the appropriate consent could receive data from the cancer registration service to supplement a study dataset. Other researchers could receive access to the de‐identified product of linking one or more existing datasets to cancer registry data.

Proposal 3: A notification service for new cancer diagnoses and other events.

Investigators could register study participants (with their consent) with the cancer registration service and allow them to be regularly informed of new diagnoses and other events.

Proposal 4: A hosting service for study data. This would provide investigators with a secure environment in which to store and analyse their study data together with routinely collected information from the cancer registration service.

Proposal 5: Support for the planning and recruitment of studies.

This would involve mechanisms for estimating trial feasibility and the likely recruitment rates of different centres, and for notifying clinical teams when patients are eligible for a particular study or clinical trial. (Potentially a joint project with the NIHR Cancer Research Network (NCRN) and others).

Proposal 6: A research support service. This would advise users on the availability of data, the requirements for access, and would manage requests and provide access.

Proposal 7: Guidance on guidance on permissions for data access and linkage.  

This would involve providing investigators with guidance on consent wording for using record linkage and notification services. (Potentially joint projects with NRES and NIGB and others).