On the 19th January, during a break between sessions with Piantelli and NicHEnergy, members of the MFMP had the pleasure of meeting Pina Renzulli in our rented farmhouse that served as basecamp for Project /Fedora\
Pina had seen a sincere presentation by Francesco Celani on how the process of Live Open Science had accelerated his research and the collective understanding of the value of his wire processing technique.
Pina is a researcher in Medicine, specifically her area of expertise is the Thyroid. When a patient has had their thyroid removed, their quality of life drops and they are required to perpetually medicate. When a thyroid is said to be "indeterminate" by ultrasound or biopsy, the policy in much of the western world is to just remove it. In Pina's work, she was horrified to find that 80% of those thyroids removed are later found to have been benign or miss-diagnosed.
Mis-diagnosis is principally caused by not fully evaluating a patients history, typically, knowing if a patient had a nodule the same size before or had previously had a fine needle aspiration biopsy (causing atypical cells) could prevent unnecessary surgery. Often this lack of review of previous history is because their is insufficient sharing of data between doctors in the field or the patient does not know what is important to share.
Having had an enlightening discussion, we see that applying the LOS approach can be very useful for reducing unnecessary human suffering and costs related to mis-diagnosis of thyroid cancer. We proposed an approach that puts the patient at the centre of any research with other principal stakeholders being doctors that have to diagnose and governments and insurance companies that might need to fund cost bearing outcomes.
Key would be for the researchers to build an online (and ideally smart-device accessible) database that would be able to be accessed for data entry by patients and physicians alike. As many questions as possible would be consistent across these two groups, and would be structured to avoid the ability to exaggerate over time, for instance, "are you feeling better, the same or worse than at you previous 6 monthly review", obviously if they are repeatedly feeling worse, then there is something wrong or they are exaggerating. Where possible, answers should be fact based distinct numbers or other explicit responses that can drive decision making.
Stakeholders might have access, with permission, to aggregate but not specific data such that trends on a life-style, geographical, age or other metric could be assessed over time against outcomes in order to drive better informed decisions by all parties as the data grows. Just as MFMP understanding is driven and enhanced by our followers, this thyroid research would be driven by the people that are most engaged, the patients.
We are extremely happy that a researcher in another field has seen the value in our pioneering approach that was enabled by the courage of Prof. Francesco Celani and hope that, in time, it can contribute to improving the lives of 10,000s people across the world.