- The use of patient health data for research purposes is gaining traction in the healthcare industry through the Precision Medicine Initiative (PMI). However, as healthcare professionals continue to value shared-decision making and patient engagement as a part of their clinical workflows, it is important to gauge patient preferences for health data sharing.
Because research initiatives like precision medicine use patient data in a setting in which the patient is not present, it is critical that providers fully understand how patients want their information used.
“Reaping the benefits of precision medicine, however, will require greater patient engagement with the health care system than is the norm in many settings currently,” Peterson explains. “Not only will patients be seen in clinical and online settings, as they are today, but also patient information will be reviewed and reused in clinical and research settings in which patients are not present.”
While most research shows patients are receptive to healthcare professionals using their data for research purposes, Peterson says understanding patient preferences is more nuanced than that. In order to foster patient buy-in, providers must understand several different patient qualities.
“By gathering pertinent details about patient preferences related to permission seeking, de identification, notification of data use, and ongoing engagement at the time that patients establish a relationship with their primary provider, clinicians can begin building the relationship needed to support lifelong data use and sharing,” Peterson notes.
Providers must take into account their relationships with their patients, noting differences in patient dispositions that may influence how they interact. While some patients may find it rude to disagree with provider recommendations, others may be too sick or weak to fully participate in a discussion regarding data sharing.
While such patient preferences may contradict the industry buzz around patient engagement, they still need to be respected.
“Though patient engagement in decision-making is becoming a core value in health care, some patients prefer the more traditional provider-centric approach, and their preferences need to be respected and accommodated,” Peterson says.
Providers also need to be sensitive to varying degrees of patient preferences for privacy. While one patient may agree to share health data regarding their latest diagnosis, they may be less comfortable sharing data regarding their obesity or other condition that may lead to a perceived sense of stigma.
To accommodate such conflicting preferences, Peterson suggests a more flexible approach:
An approach that facilitates informed consent, management of data use permissions, and data sharing by data type will offer patients and their care team the greatest flexibility in managing health data for research. An application that provides opportunities for clinicians and researchers to identify data relevant to specific investigations and for patients to choose the types of data they wish to share and the purposes for which sharing may occur can be an effective bridge between the need for privacy and the desire to innovate.
Providers can also work to support robust patient education initiatives. Thoroughly educating patients in the projects to which their data may be contributing and the security measures taken to protect their data may have a profound effect on facilitating patient buy-in. Research teams can take it one step further by notifying patients when their data is used in a study and for what purposes.
Precision medicine holds the potential for more individualized, patient-centric care. By utilizing patient data to develop new treatment approaches, researchers are able to make significant advances in healthcare.
However, as providers face these new innovations in patient-centered care, they will need to develop new methods of connecting with their patients in order to assess their preferences and obtain their health data for research purposes.
“As these technological advances become integrated into the cycle of practice innovation, implementation, evaluation, and improvement, patients and providers will need to forge new relationships based on mutual trust and shared decision-making,” Peterson concludes. “Nowhere will that requirement become more pressing than with regard to data use and sharing.”