According to a story from statnews.com, Dr. Julia Brody, who heads the Silent Spring Institute located in Newton, Massachusetts, says that her laboratory has always allowed patients and study participants to have access to their data after a study or trial has been completed. In addition, recent changes to health laws now allow patients to have access to medical records. However, although it makes sense for patients to have access to their study results and records, this is not the norm in many places in the country.
Sharing Data With Patients and Participants
Patients have steadily grown more interested in having access to their data, and some of them have come to expect having this access by default. Still, most of the time patients are not offered access to their results. Part of this new desire to see personal results stems from the increasing popularity of direct to consumer medical kits and products, such as the 23andMe DNA testing kits and sensors that can detect pollutants in the air, monitor sleep patterns, and heart rate. In fact, Julia’s lab has recently released their Detox Me Action Kit, a tool that allows you to detect chemicals in your body that could be disrupting hormone function. This kit was also crowd funded, which further highlights the popularity of these types of products.
Clearly momentum is shifting towards a more transparent research process that allows people to see medical data about themselves. However, many trials and researchers cling to obsolete “ethical standards” that discourage the sharing of data with participants.
Shifting To A Patient Focus
Of course participants can learn about the overall results of the research once the results are published, but this doesn’t tell them anything about their personal results. The motivation for withholding study data from patients heralds to a more doctor-centered perspective on research and medicine in which any data that is not directly relevant to a medical recommendation or diagnosis is not regarded as particularly useful.
It is this understanding that causes many review boards to prevent scientists from disclosing personal results to patients, particularly if they are not considered “clinically relevant.”
However, the movement to share data more freely and collaboratively with patients and study participants is underway. A review from the National Academies of Sciences, Engineering, and Medicine concluded that the old standards are not really that relevant anymore. While new standards and certifications will have to be developed to formalize the data sharing process, patients can hopefully expect more transparency in the future.
