Would you like to know that the medicines that your doctor prescribes for you are likely to work? That they will not harm you? Would you like to be reassured that drugs given to pregnant women did not cause defects like those we saw with Thalidomide? And what about all those blood tests, CAT scans or other investigations – are they worth the huge amount of money spend on them every year? Would you like to know that many of the pathways in to poor school performance, child maltreatment, suicide, ear disease and crime are similar? Many start in pregnancy! Wouldn’t you like to have information to prevent these pathways?
I would like to know about all these things. I am a researcher who has used data collected on all individuals in Western Australia for over 40 years. I have written many proposals, been approved by ethics committees, and trained my teams over this time to use the data responsibly for public good. We do not want or need to see any identifying information (data on who you are). All we need are lots of data on lots of people, young and old, men and women, wherever they live, so that we can study why they have problems or escape them, and whether the past or current services are helping, useless or hindering their lives. With My Health Record, we would only use that data if it were anonymised and pooled, which is appropriate, as we are looking at patterns of disease, whether doctors and hospitals are providing the best care and what are costs, harms and benefits to the population they are serving.
It was from such use of data that we found how to prevent spina bifida and similar serious birth defects by improving mothers’ diets with folate early in pregnancy, resulting in falls in these defects in Australia. The WA team also identified that plane travel was associated with blood clots in legs and resulted in preventive actions on planes. We have documented the importance of mental health problems including alcohol exposure in pregnancy to problems in school and as risk factors for kids being locked up. We suggest that prevention is better than locking these kids up. And our data also suggest that it’s better not to put kids in detention but to support them and their families in other ways to avoid lives of crime and suicide.
Australian governments (state, territory and federal) have been collecting data on people who use their services for years. If we have these data which we could use to prevent deaths, defects and diseases, but do not use them, how do you feel?
Are you worried about us invading your privacy? Over these 40 years in WA we have developed very strict guidelines to avoid any researcher ever finding out who individuals are; we have not had one such breach in our work in all that time. But the benefits have been enormous and the community in WA trust us to do the best work to improve their lives and wellbeing. It would be marvellous if this could now happen across the nation.
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