How should we evaluate patient access to their own records? An example with cancer patients in Scotland

Government policy in many European countries now assumes that patients should have access to their own medical records. Increasingly such access can be used as one method of tailoring a wide range of information to the patient. Process evaluation, to ensure that human computer interfaces of such systems are appropriate, is needed during their design and implementation. However, studies to assess the impact on health outcomes are relatively expensive and time consuming so are they worth doing? We are carrying out a randomised trial of different types of computer-produced booklet including one based on information from the medical record. Four hundred cancer patients in Glasgow Scotland have been randomised on three binary variables: (a) whether patients chose the information themselves or if it was chosen for them; (b) whether it included personal information from their own medical record or not; (c) whether it included advice on the management of anxiety. We are investigating two 'levels' of outcome: (i) whether booklets are used to help engage and so improve patients' social support, and (ii) whether booklets and the level of social support affect patients' anxiety. We are also assessing anxiety in the patient's 'significant other'. To assess the views of both professionals and patients about the utility of our study, we developed a website which described our project and asked for users' predictions of our outcomes and their assessment of our method. There was no consistent prediction for the results of our stud, suggesting that it will be worthwhile to complete the study to inform discussion. The results will influence the way we give patients access to their medical records and could influence perceptions of its importance compared with other health service activities. Even though health service policy is to give patients access to their records we still need to assess outcomes in terms of health, and wellbeing both for patients and their families.