Patient-generated health data (PGHD) refers to data created, recorded, andgathered from or by patients, their family members, or caregivers in the management of various health conditions.PGHD allows patients and caregivers to alert healthcare professionals of possible problems quickly and easily, and to mitigate potential life-threatening scenarios. PGHD use has steadily increased with the widespread adoption of personal technology like smartphones, mobile apps, and wearable health devices that enable patients and their caregivers to generate and share health dataeasilyoutside of a traditional health setting(e.g., a physician’s office). Yet many providers are hesitant to adopt or advocate the use of PGHD, despite the fact that their patients may want to use electronic tools tomanage their conditions better.
PGHD Means Improved Patient Involvement
Electronic health records (EHRs), patient portals, and secure text messaging have improved patient involvement in healthcare and helped many patientsto connect with their physicians more easily and on their own terms. Overall, PGHD combined with clinical data can help healthcare providers a compile complete digital dossier of their patient’s health. So why are many healthcare professionals so hesitant to adopt a PGHD plan?
One of the biggest challenges of PGHD to providers is the sheer volume of data generated. Most providers are truly overwhelmed by the volume of data and are at a loss about how to use it for the best clinical outcomes. The success of PGHD is dependent on access to data, the accuracy of the data, and privacy concerns over how data is collected and shared by patients and their caregivers.
Using PGHD Effectively and Securely
Addressing these various concerns may improve the effectiveness of PGHD overall. Healthcare providers, caregivers, and patients can start by familiarizing themselves with the core issues to start using PGHD effectively and securely:
- Accountability and liability: When reviewing PGHD, healthcare providers are first and foremost concerned about missing key facts or details in the enormous amount of data collected, and then being held responsible for it. Healthcare providers can answer this issue by employing analytical tools, building processes into their workflows, and evaluating what information to include in the EHR. They may also have to confirm the accuracy of PGHD derived from personal health devices and apps while managing the security risks and compiling all this data into a standardized format.
- Privacy: There is always a fear of impending data breach and losing PGHD to hackers. With privacy regulations like HIPPA in place, it is important for all stakeholders to decide whether they want to employ mobile apps and devices to track their health data. Those who think that the benefits outweigh the risks may be amenable to sharing PGHD.
- Standardization of data: Stakeholders must be able to verify that the data collected is accurate, valid, and updated. If they are unable to verify the source of the data and whether it is current, healthcare providers will not be able to provide answers to the patient’s health issues and may be second guessing the PGHD itself. Standardization, authentication, reliability, clinical value, validity, and workflow improvement by organizations will help address the concerns of the healthcare providers. Only then will providers be able to trust the PGHD and use it effectively.
- Processes and workflows: With the enormous amounts of health data being generated constantly, incorporating PGHD into the workflow can be difficult. If vital information is missed, then patient care may suffer. So, healthcare organizations are faced with figuring out the best method of incorporating PGHD into the workflow. Added to this is the simple reality that many healthcare providers are averse to change. Listening to provider concerns and providing positive proof of the advantages of PGHD data may be a way to move toward greater adoption and implementation of PGHD into hospital and practice workflows.
- Expectations: All stakeholders, especially patients, expect instant solutions in this internet and digital age. They are demanding more access to their health information. As a result, healthcare providers are under pressure to serve patients and their caregivers and meet these changing expectations. Setting expectations may be the first step in addressing this issue. Once patients are provided with access to their own EHRs and all stakeholders get used to the process, then the PGHD could be incorporated into more clinical workflows.
Despite the security risks and volume of data, the benefits of PGHD far outweigh the challenges. To help hospitals and providers get over their hesitancy will require input from all parties involved. While the push for PGHD may come from patients themselves, they may not beaware of the risks involved and will need some education on how to protect their PHI. Software developers can help physicians by providing the tools that enable data capture, sharing, and use of PGHD. Greater standardization of the data across devices and apps that compile PGHD into EHRs will also ensure better functionality, accuracy, and validity of the data overall. Insurance payers can help by increasing access to digital technologies for their patients and facilitate PGHD gathering with devices and apps. They can also motivate data sharing by clinicians for using PGHD for transition of patient care. Finally, federal and state policymakers can collaborate with all stakeholders, addressing their concerns about PGHD, setting standards and formulating regulations about sharing the data, to help resolve the myriad issues associated with PGHD.