Advocacy – your Info

Information sheet about Jenny Kitzinger and Celia Kitzinger, co-directors of the Coma and Disorders of Consciousness Research Centre

As a result of our research on prolonged disorders of consciousness we are sometimes approached by families of severely brain injured relatives, and/or the staff, with requests for support and help in navigating the complex medico-legal system around the care of these patients. This short information sheet gives a brief outline of the way we work with people seeking our support and refers you to places you can find more information.

• We will not use anything we learn from our privileged position of supporting you until and unless we have your explicit permission to do so.
• There is absolutely no expectation or obligation that you will consent now or in the future to any information that we learn from you being used in our research.
• Some aspects of your story may already be in the public domain, or may become so in future (e.g. court hearings are usually public). We reserve the right to use and comment on publicly available information as we would on any other case in the public domain – but we will NOT use any privileged information obtained through any support we may have given you without your explicit (written) permission.
• If you would like to know more about our research, you can explore our website (cdoc.org.uk) and read the articles and chapters we have already published: there are also videos in which we talk about our research. You may also be interested in our multi-media online resource with healthtalk (click here).
• If you’d like to know more about why we started research on disorders of consciousness, and particularly about what happened to our sister, Polly Kitzinger, you can read our short blog entry. Click here.
• If, in the future, we were to ask your permission to include privileged information about you in our research we would ask for a formal recorded interview with you. We would make this request in writing and we would require written consent from you.  You can find an information sheet about our general research project here, and about our ‘healthtalk’ work here. You can also see a standard consent form [here].  We would also (separately) ask permission for use of any material quoted from your email correspondence or telephone/face-to-face conversations with us and we would not use any such material without your specific (written) permission.
• We recognize that some people feel very strongly that they would like their story to be told, and you may have approached us for this reason. We do not have the time and resources to include everyone in our research – but we may have suggestions for journalists or other researchers who might be able to help.