DOTmed News: Survey results demonstrate importance of patient health care data sharing education

By Q-Centrix | August 2, 2022

By Sara Bienvenu, RN and manager of clinical quality growth at Q-Centrix

In the last two years, drug development, treatments and health care in general have made incredible strides, thanks to the industry better understanding and utilizing the value of patient health care data. More specifically, the clinical data that is collected by hospitals and health systems during every patient interaction is leading to rapid innovation.

Because of the critical insights that can be gained from patient health data, this clinical data is essential to closing gaps in care, working toward achieving health equity and better patient health outcomes.

As the role of clinical data becomes more prominent, so too does the relevance of patients’ knowledge of how health care data is being used. Understanding the value and potential of this data to better patient care and outcomes, Q-Centrix commissioned a survey to uncover patients’ attitudes and beliefs toward the sharing of their data and how education around it can be improved.

The overall findings revealed an opportunity to educate patients on the significance of their health care data, not only as it relates to their own health but the health of others.

The collection of health care data

Understandably, there was some concern around personal data being shared, with 41.7% revealing they were “very” concerned and then another 44.7% were “somewhat” concerned.

When it came to what personal data they think is collected and shared in general, most respondents (86.6%) thought of generic things like names, phone numbers and addresses that are common in marketing initiatives; about half (51.6%) thought that health information was collected and shared. This makes sense when considering that 60.6% of respondents had never discussed how their health care data is used.

While these answers highlight an overall lack of understanding surrounding the collection and sharing of health care data, they also present a great opportunity to educate patients on the power of sharing data.

Understanding health care data’s value

Health care data is essential to the direction of patient care; it is often used to support continuity of care and personalized health care. Nearly half of respondents (45.9%) agreed that the sharing of health care data was important.

Looking at specific situations where health care data may be shared, 70.8% of respondents were happy to share their de-identified data if it meant it would be used to improve their own health care. 61.7% said they would share it for the betterment of clinical research; 59.6% to improve hospital services; 56.7% to improve other patients’ health care and 52.3% said they would share the information to advance health care equity and identify disparities.

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 health care data and their health care 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 health care 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 health care data was beneficial in achieving equitable health care, 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 health care data is protected.

Greater transparency into organizations’ health care data sharing will be instrumental in earning patient trust, as the survey found that 70.6% respondents are comfortable sharing their data with health care providers that have treated them directly with less enthusiasm for medical organizations (43.7%), government organizations (42.2%), health care 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 health care landscape and fellow consumers. Their data will lead to better, more personalized care, improved hospital services and the advancement of health care equity. Data sharing is undoubtedly the future of medicine.

Published in DOTmed News. Read the article here.