“Plant (data) in rows if you are going to harvest.” – Abhishek Jha, Elucidata
Abhishek Jha describes the urgency and challenges with curating data to improve decisions in patient care. Towards the dream of collecting data, integrating data, and generating usable information – the path starts with how the data is collected and stored at the beginning. Working backwards from the patient, different data repositories are often not structured, making data mining challenging. Often data cannot be used because of the lack of structure in public and proprietary repositories. Abhishek’s dream to structure data with better quality control – and standardize – will help streamline bioinformatics performance, allowing experts to make better decisions, and improve patient care.
During this Everyday, Jinming Xing describes his personal experiences that drive his passion for microsampling. As a pharmacist, he was influenced by the understanding that some children are simply scared of needles – a 5 second shot could take an hours conversation. He was also personally influenced by the amount of blood that was drawn from his own sick son. Now, Jinming works closely with the early stages of clinical research related to sick children, focusing on microsampling. He puts all of his efforts, Everyday, into reducing the burden for paediatric clinical trial participants.
JJ Kim, Nottingham Children’s Hospital/University of Nottingham
“It’s really about what patients need, and (what) your colleagues need. And listening to them.” – JJ Kim, Nottingham Children’s Hospital/University of Nottingham
JJ Kim delivers a presentation on the development of CountOnMe, and the care taken while working with patients and at home micro sampling. He describes a survey and system of feedback that can be used to improve education and for increased engagement with patients. During this CPSA Everyday, he discusses that the best results come from actually listening to the patient, and not only the contributions from the 1% of the community that pushes out a test or result. Also, he finds that microsampling is not just a replacement for a hospital visit. He asks the questions: How can we use micro sampling to demarcate needs and to give patients more independence? And how do we truly understand a patient’s condition and need? This is what JJ and his team are evaluating, with continuous feedback from patients, and persistence to what is needed next.
