Merilyn Riley: Senior Research Officer, Victorian Perinatal Data Collection Unit, Department of Human Services, Victoria.
Diversity and change are two words that come to mind when I read the professional profiles of Health Information Managers (HIMs) in Health Information Management Journal. It is amazing to see the variety of positions HIMs have filled, and the many countries in which they have worked. As a HIM who graduated over 20 years ago, and who has spent her professional life primarily in one organisation, my professional profile is not typical of most of the recent profiles I have read. However, although employed by the one institution over most of this period, the terms diversity and change can still apply. During my career I have held several different positions and the tasks I have undertaken have changed dramatically during that time.
In the beginning
I completed the Bachelor of Applied Science in Medical Record Administration (as it was then called) at Melbourne's Lincoln Institute of Health Sciences in the first stream of students after the course had been converted from a Diploma to a Bachelor's degree. In those days the coding classification was ICD-9, we still had to type discharge summaries (on a typewriter) from audiotapes to practise our medical terminology, and we had limited exposure to computers.
Even from those early days I knew I was more interested in the non-traditional HIM roles than working as a hospital-based Medical Record Administrator (MRA). When I applied for, and obtained, my first position with the Victorian Perinatal Data Collection Unit (VPDCU), I never envisaged that I would still be there over 20 years later.
The Victorian Perinatal Data Collection Unit (VPDCU)
The VPDCU is a mandatory statewide population-based data collection established to collect information on the health of mothers and their babies. It was established in 1982, by an amendment to the Health Act (1958), and collects information on all babies born at 20+ weeks gestation or 400+ grams birth weight on a standardised form known as the Perinatal Morbidity Statistics form. This form is usually completed by the attending midwife for all hospital and home-based births and is forwarded to the VPDCU for processing and analysis. This enables us to collect, collate, analyse and interpret information on, and in relation to, all births in Victoria.
An important subset of data collected by the VPDCU is the Victorian Birth Defects Register (VBDR). A birth defect is defined as an abnormality in body structure or chemistry that was present at birth, although it may not necessarily have been noticed at birth. Birth defects contribute significantly to perinatal, infant and childhood mortality and are the cause of one in five paediatric hospital admissions. The VBDR collects information on all birth defects for live births, stillbirths and terminations of pregnancy (both before and after 20 weeks gestation) occurring since 1 January, 1982. The maintenance of the VBDR is an ongoing function of the VPDCU.
It is with these two datasets that I have spent the last 20 years coding, processing, analysing and reporting data.
Role 1: Assistant Medical Record Administrator
My first role in the VPDCU was as an Assistant MRA in a unit which comprised two MRAs (including myself), 3.5 clerical staff, one midwife and one part-time Director. Our main tasks in those early days were coding the Perinatal Morbidity Statistics Forms with ICD-9, querying hospitals for missing or contradictory information, reconciling edit reports, entering birth defect data into a computer (from which you never got anything back), providing each obstetric hospital with a simple report of the data they sent in each year, and providing data to the National Perinatal Statistics Unit. This may sound simple, yet it took most of our time to keep our heads just above water (in terms of workload), due to the manual nature of much of the work.
During this time we saw the introduction of a computerised 'Names Register', but that is about as far as technology went. Running a report would usually be an overnight process and trying to abstract data from the system was like pulling teeth.
A brief break
After three years in this role (with a few months as Acting Chief Medical Record Administrator), I actually left the VPDCU to pursue further studies in a totally unrelated field (Bachelor of Theology). However, while pursuing these studies I still maintained my links with the VPDCU and continued to work half a day a week and full-time during holidays.
Role 2: Research Assistant, Nursing Mothers' Association (NMA)
While most of this professional narrative is about my time with the VPDCU, I need to include a short snippet on the 18 months I spent as a research assistant with the Nursing Mothers' Association. After studying my Bachelor of Theology full-time for two years I married, and dropped back to part-time studies. I increased my workload to two and a half days a week (two days with NMA and half a day with the VPDCU).
The Nursing Mothers' Association (now known as the Australian Breastfeeding Association [ABA]) is 'an organisation of people interested in the promotion and protection of breastfeeding ... with the primary aim of giving mother-to-mother support to breastfeeding women' (Website: http://www.breastfeeding.asn.au/).
At this time the Nursing Mother's Association had obtained a grant to investigate the relationship between pre-menopausal breast cancer and breastfeeding. They undertook to investigate the hypothesis that increased breastfeeding is a likely preventive to the development of pre-menopausal breast cancer. If this was the case, then women who were members of NMA and who, in general, breastfed for longer than the general public, should have a lower incidence of pre-menopausal breast cancer than the general population.
It was my task to locate the first 7,000 members of NMA, establish a database, send out questionnaires on obstetric, breastfeeding and outcome (i.e. cancer or no cancer) factors and enter all of the data for analysis. I learnt a lot from this experience. I spent days trawling through the white pages trying to locate these first 7,000 women who were members from 1962-1973. As I undertook this research in 19911992, some 20 to 30 years after the membership period, many of these women had moved. I also spent days at the electoral offices going through electoral roles. And that is just a couple of the tasks I had to undertake.
It was this role that really gave me my appreciation for what it meant to be involved in research--months and months gathering and sorting through data, lots of set-backs and the enormous amount of time involved, and yet the joy of seeing the database come together and the thrill of analysing the outcomes more than compensated for these hardships. That was it, I was hooked! I wanted to work in research.
Role 3: Health Information Manager/ Chief Health Information Manager
After completing my Bachelor of Theology, an opening became available for a full-time position with the VPDCU again. I began again in the role of HIM, and within a couple of years was the Chief HIM. Our staff allocation was still the same, except we had now added a part-time Research Officer.
During my absence things had gone ahead in leaps and bounds as far as computers were concerned. SPSS (Statistical Package for Social Sciences) was now the Department's preferred statistical package, and Microsoft Office had come onto the scene. My role at the VPDCU gave me many opportunities to learn all of these various packages, and provided ongoing opportunities to utilise them in my work.
It was during this period that I also decided to further my interest in research by completing a Postgraduate Diploma in Epidemiology and Biostatistics at the University of Melbourne. This took two years of part-time study. It was this course that provided further grounding in research methodologies, how to critique peer-review journal articles, and the fundamentals of many statistical techniques.
Role 4: Chief Health Information Manager/ Research Officer
Meanwhile, tasks and roles at the VPDCU continued to evolve. Due to the sudden death of our Research Officer, I took on the role of Chief HIM and Research Officer, so we employed another HIM. I was now responsible for completing many of the 100 or so ad hoc requests the VPDCU received each year for non-published data. The ability to analyse our data had greatly improved over the years. No longer did we have to wait overnight for the computer to produce the results.
Over this time, we also saw the development of an in-house Perinatal Morbidity Statistics system (PMSS), which enabled me to explore the processes involved in the development of computer systems. I was heavily involved in writing the system specifications for our new PMSS.
It was during this period that we also began to introduce more processes to ensure good quality data. As a population-based data collection that is used widely for state, national and international research, it is essential to ensure that the data provided to researchers is as good as it can be. We began to undertake an annual validation of the number of births each year, by comparing the forms sent to us against hospital listings of births at each hospital. This is a very time consuming task but we manage to pick up an extra couple of hundred forms each year for births where the hospitals had 'forgotten' to send in forms.
We also introduced more stringent processes for cross-checking data before the final annual file was closed off. Every one or two years a validation study was undertaken on either some aspects of perinatal or birth defect data. Maintenance of high quality data was, and always will be, a very high priority for the VPDCU.
During this period we also produced our first Births in Victoria and Birth Defects in Victoria reports. These are biennial publications, each being produced in alternating years. Production of these reports was (and still is) a major focus of mine. Bringing together publications like these (even if they are not peer-reviewed) is the culmination of all of the hard work that is put into collecting, processing and analysing the data.
Another brief interlude
It was around this time (1998) after things had been running pretty smoothly for a couple of years that I took 12 months maternity leave after my daughter was born.
Role 5: Senior Research Officer (current role)
After a year on maternity leave, I returned to the VPDCU as (part-time) Senior Research Officer. Whilst still involved in many of the routine aspects of data processing and quality, I now became responsible for monitoring, and participating in, the research activities of the VPDCU. Research in the VPDCU can involve several different aspects:
* Abstraction and provision of data for ad hoc non-published data. There are approximately 100 ad hoc requests for unpublished data each year that can range from a simple request related to the number of births to teenage mothers in a particular locality, to a large request for many cross-tabulations of various items over long periods of time.
* Participation in collaborative research projects. Perinatal and birth defect data are used in a large number of state, national and international collaborative research projects. Permission for the use of the data in such settings must be sought from both the Consultative Council of Obstetric and Paediatric Mortality and Morbidity (the body under whose auspices we operate) and the Department of Human Services Human Research Ethics Committee. There are probably about six or seven ongoing projects each year. For example:
* Updating predictors of having a baby with neural tube defects. This is a collaborative project with a Paediatric Fellow from the Melbourne Royal Children's Hospital that aims to describe changes in the epidemiology of births affected by neural tube defects, following the introduction of voluntary fortification of foods with folate and a folate awareness campaign.
* Health concerns around a toxic waste dump. This was a collaborative project with the Environmental Health Unit, Department of Human Services (DHS), and the Anti-Cancer Council (now the Cancer Council). A local city council and action group approached DHS regarding health concerns related to a landfill used for industrial waste. They requested an investigation on diseases in the population living near the landfill, being concerned about cancers, miscarriages, multiple sclerosis, asthmas, skin disorders and birth defects. The VPDCU compared birth related conditions (low birth weight, pre-term births and perinatal mortality) and birth defects between the area surrounding landfill, a control group and the remainder of the state.
* In-house research projects. As time permits, and as issues arise, the VPDCU will initiate and undertake internal research projects. In 1998, we undertook a study on models of maternity care being used in Victoria with a project entitled The WUDWAW Study (Who Usually Delivers Whom And Where).
Research within the VPDCU is wide and varied. It is the opportunity to be involved in this that keeps the work interesting and varied. There are ALWAYS routine tasks to do, but amidst this there are also opportunities to either participate in, or assist fellow researchers in broad spectrum perinatal/birth defect research.
For the past 18 months my primary focus has been with the Victorian Birth Defects Register. We have been working hard on increasing our notification sources and improving the quality of the data in the Register. We are producing regular Victorian Birth Defect Bulletins, and I am involved nationally with improving the ICD-10 Chapter on Congenital Malformations (Q-codes).
Where to from here?
Having been involved in this work for over 20 years, you may well ask 'Where to from here?' As long as I keep enjoying the work and the people I work with, I cannot see the need to move--changes are constantly taking place around me. (However ... lurking around the corner is a desire to complete a PhD. Learning is never finished. For me, if you cease to learn then you cease to live.)
Merilyn Riley BAppSc(MRA), BTheol,
PostGradDip(Epidemiology & Biostatistics)
Senior Research Officer, Victorian Perinatal Data Collection Unit
Department of Human Services
GPO BOX 4003
Melbourne VIC 3001
Phone: +61 3 9096 2702
Fax: +61 3 9096 9183
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|Title Annotation:||Professional profiles|
|Publication:||Health Information Management Journal|
|Article Type:||Viewpoint essay|
|Date:||Feb 1, 2008|
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