The educational opportunity around sharing de-identified data is further shown with half (49.7%) of respondents indicating they would be comfortable with their de-identified electronic medical data being shared for patient care and research purposes. Beyond that, 25.4% were not comfortable with it and another 24.9% were unsure.
These findings make it clear that there is a gap between a patient’s understanding of the personal benefits of their healthcare data and their healthcare data’s value. What can be learned from one patient’s health experiences might be instrumental in the care of another. Sharing data stands to help more people receive the best care possible; these findings indicate an opportunity for the healthcare industry to make this more widely understood.
A need for education and trust
Some of the concern around sharing de-identified data might be caused by a combination of a knowledge gap on why the sharing is so beneficial, and a mistrust in organizations properly handling their data.
Highlighting the lack of education, 42.9% of respondents believed that the widespread use of healthcare data was beneficial in achieving equitable healthcare, with 23.7% believing it was not and 33.4% remaining unsure.
Education will be key in assuring patients that their data is accurate and in good hands. Only 48.8% of respondents were confident that their electronic medical records were accurate and 28.4% believed organizations are doing everything possible to ensure their healthcare data is protected.
Greater transparency into organizations’ healthcare data sharing will be instrumental in earning patient trust, as the survey found that 70.6% respondents are comfortable sharing their data with healthcare providers that have treated them directly with less enthusiasm for medical organizations (43.7%), government organizations (42.2%), healthcare providers who have not treated them directly (32.2%) and insurance companies (29.3%).
The message is clear: patients need to be assured that their data is going to be handled safely and securely. Right now, the default sentiment appears to be one of caution over their data. Hospitals and health systems have to make a meaningful effort to further educate their patients on the data’s value and security if they hope to change this existing perspective.
Putting it all together
This survey demonstrates an opportunity for health systems. It is time to broaden patient education on health data sharing to highlight how transformative health data sharing can be for the healthcare landscape and fellow consumers. Their data will lead to better, more personalized care, improved hospital services and the advancement of healthcare equity. Data sharing is undoubtedly the future of medicine.