Information that can be given to researchers over the telephone needs to be clarified

EDITOR,—As researchers conducting a follow up study of patients after their discharge from a secure forensic psychiatric unit we wish to report our experiences of dealing with research ethics committees. We have experienced many of the problems experienced by Claire Middle and colleagues1 but wish to highlight the range of procedures that we have had to complete before gaining access to information on patients.

Hospitals that had accepted patients after discharge from the unit were contacted about subsequent admission to hospital, the patient's current address, and the identity of professionals involved with the patient's care. In some cases this information was given directly over the telephone by the medical records department after a brief explanation of the research. Some hospitals returned the telephone call to check on our identity. If we were directed to the patient's psychiatrist, again we might be given the information orally or be asked to put the request in writing. One consultant wanted us to contact the patient for permission, but this proved difficult as the patient had been lost to follow up from that hospital for over five years.

Similar variation in response was experienced for the second part of the study, which involved a short interview with patients. One consultant stated that he did not care what we did to any of his patients, some wanted a written request, and a few requested a copy of the research protocol. Three hospitals that we contacted had their own research ethics committees, which required us to complete highly complicated proposal forms that were not at all user friendly. One of these hospitals was unable to accept references to the research protocol, which had secured a grant of pounds sterling170000, and wrote asking us to complete the form “properly.” In total, six months elapsed between our first contact with this hospital and the interviews with the patients being cleared.

Requests for information from government departments produced a similar variation in the amount of correspondence required. One department failed to produce any information despite numerous letters, faxes, and telephone calls and, indeed, never acknowledged our requests.

We wish to emphasise the diversity of the responses we received. There is a need to standardise the type of information about patients, especially psychiatric patients, that can be disclosed to telephone callers, particularly in the light of Claudia Court's news item on employers' view of mental illness.2