9.9. Contacting patients about research studies

This part of CRATE implements the consent-for-contact traffic light system described in the overview.

The principle is that researchers are only given information that will identify a patient with that patient’s explicit consent.

9.9.1. View/manage your studies

This section is a Django admin site that allows researchers to enter details of their studies and associated information. Contact requests

Here, you can view and filter your contact requests and their progress (showing the aspects that you’re allowed to see) [1].

You can also submit a contact request.

Clinicians will be able to respond in one of the following ways, with the coresponding code letter:

R: Clinician asks RDBM to pass request to patient A: Clinician will pass the request to the patient B: Clinician vetoes on clinical grounds C: Patient is definitely ineligible D: Patient is dead/discharged or details are defunct

As of CRATE version 0.18.94, option C will always be available to the clinician. Emails

Here, you can view e-mails sent by the system to which you have access [2]. (You won’t be able to see others, like e-mails sent to clinicians about patients you might wish to identify.) Leaflets

Here, you can view leaflets associated with the system as a whole [3]. Letters

Here, you can view letters that the system has generated electronically and send to you or your team, if you have permission [5]. Studies

Here, you can view studies with which you are associated [4]. The RDBM can edit these for you.

9.9.2. Submit a contact request

Suppose you’re running an approved study and have found patients in the de-identified database. You’d like to meet them. You know their research IDs, but you don’t know who they are. Do they want you to contact them to offer them potential participation?

Researchers can submit contact requests based on RID or MRID.

Database administrators (RDBMs) may also look up using identifiable information such as the MPID.

Clinicians have an additional privileged contact request option.