Download R40 Irish Association for Palliative Care

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