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David Smith Principal Officer Legislation Unit Department of Health and Children Hawkins House Hawkins Street Dublin 2 1 September 2008 RE: Consultation on proposed Health Information Bill Dear Mr Smith, I am replying to your letter in June to Mr. Patrick Quinlan, former Chairperson of the Irish Association for Palliative Care. I am a member of the Executive of the IAPC, a membership organisation for those working in palliative care. The discussion paper and audit document are very clear and well written and set out the important issues relating to the proposed Health Information Bill. Clinical Information Frequently specialist palliative care services work in an advisory and consultative role, in many different settings including in the patient’s home, in specialist palliative care services, in hospitals and in nursing homes. To be able to access patient information including results and discharge letters easily would enhance the work of specialist palliative care teams, and facilitate seamless care. Easy access to clinical information would facilitate appropriate care, by reducing the need for hospital or A&E referral, if patient’s diagnosis was clear e.g. to locum doctors, and also would reduce the need for repeat assessments and investigations. Information about a patients Advanced Care Directive would also be available to health care practitioners, particularly when patients are ill and unable to state their wishes. Also, which is particularly relevant in Palliative Care, all relevant staff and organisations could be informed of a patient’s death. Audit, Research and Service Planning Conducting research in the palliative care population is difficult. Access to patient data for the purpose of research would be very helpful. The IAPC recognises the important role of research ethics committees in approving the use of coded patient information for research purposes. For audit, research and service planning, the possibility of using anonymous (rather than coded) information should also be considered in the Health Information Bill. Palliative care is a relatively new speciality and there are many challenges facing this into the future. One particular challenge is the role of specialist palliative care for the management of patient illness rather than cancer. Collating information about diagnosis and morbidity has the potential to enhance service planning. Access to records Access to patient information, both during the patient’s lifetime and after the patient’s death, is a challenge. Currently the Freedom of Information Act, allows very open access to the records of deceased patients by family members, including separated spouses. This needs to be addressed. Reference is made to access to patient notes by parents. In Ireland an unmarried mother is considered the sole guardian of a child and there are restricted legal rights for unmarried fathers. The role and rights of unmarried fathers in relation to this legislation should also be considered. Societal Concerns The document makes a point that legislation reflects the values of society. This proposal has the potential to cause great anxiety among the public. The legislation should be accompanied by clear education about the value of this for an individual patient and the value to society. The security of all data needs to be guaranteed. Overall the IAPC will support the development of the Health Information Bill to improve the flow of information to facilitate new technologies and improve research and service planning. Dr. Regina McQuillan, FRCPI Consultant in Palliative Medicine