At the ESRI, we manage the Hospital Inpatient Enquiry and the National Perinatal Reporting System on behalf of the HSE and the Department of Health & Children. As we are directly involved in the collection of statistical information related to health service use, we would appreciate it if the following points would be taken into consideration in the development of a Health Information Bill:
1. Establishment of a Unique Personal Identifier is essential if current and future developments in health information are to be used for the purposes of safeguarding patient safety and promoting continuing improvements in the effectiveness of clinical and more broadly based health services.
2. All health professionals should have a unique number which is registered for all patient contacts. This is essential to ensure that all patient contacts can be traced to the relevant health care provider and that there is an adequate audit trail which can be reviewed to assess quality and related issues in terms of the patients care.
3. The collection of comprehensive, timely and high quality statistical information on a range of functions within the health system is essential for many reasons including such factors as the identification of problem areas, the conduct of audits, the identification of factors related to the adequacy and safety of patient care etc. We would therefore not support a provision to allow individuals to ''opt'' out of such systems. What may be preferable is allowing individuals the right not to have their unique personal identifier reported so that their identity is protected. The disadvantage of such a measure, of course, is that the option of tracking and auditing care for the individual is then lost.
4. The extent to which individual health agencies (e.g. hospitals) may be identified in reports on such issues as relative efficiency in terms of health service provision etc needs to be addressed.
5. Drawing clear distinctions between statistical, medical and personal data in terms of contraints on confidentiality, privacy and access will be critical if statistical data are to be available for research and planning purposes. Statistical data like HIPE provide the only comprehensive evidence base on which many decisions (e.g. workload measurement, factors impacting on hospital activity) can be informed. Any retrictions on the use/access/collection of such data would negatively impact the potential of these statistical data sources to inform important public policy decisions.
If any further information/clarification is needed on any of the issues identified here, we would be happy to follow up as requested.
Yours sincerely
Miriam Wiley
Professor Miriam Wiley
Head, Health Policy & Information Division
The Economic & Social Research Institute
4 Burlington Road
Dublin 4
Ireland
Tel +353 1 865 2000
FAX +353 1 865 2100
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