Happy New Year
Here at NWABR we hope that you all had a healthy and fund start to the new year. I had two people I know admitted to hospital over the season – both with fairly inexplicable signs and symptoms – both are now out and feeling better and it was still scary for all concerned.
An article on NPR yesterday Big Data Not A Cure-All discussed a case when a physician at Lucile Packard Children’s Hospital felt like she had seen a number of emergency pediatric lupus cases where blood clotting had become a serious issue. A child presented with lupus and she called the team together to consider administration of an anti-coagulant to prevent the chance of a blood clot. In the absence of actual medical research on lupus and clotting and because anti-coagulants are not risk free the team decided to do nothing.
The physician in this case then ran a query on their electronic record database and found that a high proportion of lupus patients had experienced blood clotting. With this new information the team administered the anti-coagulant and the patient avoided this complication.
The ability to access electronic medical records is a potential treasure trove for medical researchers. The data is there, large numbers can be examined at low cost and the potential for knowledge generation is significant.
The article also raises concerns about basing treatments based on historical data. The potential for data errors and spurious correlations needs to be addressed. This is also a form of medical research and there needs to be protections put in place to respect patients rights. Most patients have not explicitly consented to allow their data to be used for such after the fact research. Protocols obviously need to be addressed that ensure confidentiality and appropriate use of this data, and to also ensure that treatment protocols leveraged from such data are also safe.
All of that said, the ability to make use of this treasure trove is exciting and definitely brings with it the potential to increase the impact of medical research.
Take care out there.