Patient-generated health data (PGHD) allows patients to participate in their health management by reporting data related to their well-being or condition. An example of PGHD is a patient using a glucose monitor to track their blood sugar levels throughout the day, giving their healthcare provider insights into their condition that are not captured during sporadic office visits. Ongoing data collection can lead to more personalized interventions based on consistent data sets.
It should be noted that PGHD relies heavily on a patient's willingness to engage with technologies and share their data. When these patients participate in data collection, organizations and patients must also consider data privacy concerns.
Privacy concerns associated with PGHD
As PGHD is often collected through various devices and applications that don’t have security measures, the chances of a data breach are higher. The vulnerability is exacerbated by the fact that PGHD does not always fall under the same protections as traditional health data governed by HIPAA. Lastly, since PGHD is collected by patients, there is the potential for misinformation or incomplete data.
PGHD should be sorted through and checked for validity, but this can make organizing health records more time-consuming or lead to potential mismanagement.
The benefit of PGHD to health outcomes
PGHD gives healthcare providers a rich, real-time view of patients' health beyond episodic visits. A full review allows for the improved accuracy of diagnoses and the effectiveness of treatment plans. Patients participating in their diagnosis and health management are also more likely to engage in their treatment plans.
A study published in Health Informatics Journal notes, “PGHD has the potential to support shared understanding between patients and clinicians, which could increase satisfaction, promote patient participation during clinical encounters, patient trust of their clinicians, and treatment adherence.”
How to use HIPAA compliant platforms to share PGHD
Healthcare organizations come in various sizes making it hard to provide specific steps tailored to the needs of all practices. However, some general steps should be followed to collect and share PGHD, including:
- Segment patient populations based on demographics or health conditions that would benefit the most from PGHD collection.
- Use opt-in forms to get consent from patients for the collection and use of their PGHD via email and text messaging.
- During the registration process, request the patient’s email addresses and cell numbers to send reminders about health conditions. The use of HIPAA compliant forms offered by Paubox makes this step easy.
- Use patient data to personalize HIPAA compliant emails to address recipients by name and provide content relevant to their health needs like specific reminders for diabetic patients.
- Design content that reminds patients about the option to share their health data through secure means to assist in the improvement of health outcomes. For example, start with headings like “Help Us Track Your Health Progress”.
- Design simple, secure forms patients can complete directly from their email accounts to submit PGHD.
- Consider using HIPAA compliant text messaging platforms like Paubox to share quick and convenient updates on patient health throughout the day.
FAQs
What is the difference between PGHD and patient-reported outcomes?
PGHD refers to data created by patients or their caregivers. Patient-generated outcomes is a subset of this which specifically focuses on a patient's perspective regarding their health status and the health outcomes of healthcare interventions.
What differentiates text messaging platforms like iMessage from HIPAA compliant text messaging platforms like Paubox?
Platforms like iMessage are designed for general communication while HIPAA compliant text messaging platforms like Paubox are designed to secure patient data through the incorporation of encryption and other security features.
Should PGHD be included in EHRs? What is the risk of not including it?
Yes, integrating PGHD into electronic health records (EHRs) provides a comprehensive view of a patient's health status for improved clinical decisions.
The risks of not including PGHD include:
- Incomplete patient profiles
- Missed opportunities for interventions
- Reduced patient engagement
Kirsten Peremore
