Patient Generated Health Data: Addressing Concerns and Moving Forward

There is no denying that healthcare in the United States is undergoing a massive shift toward a value based model. With this shift we have taken baby steps towards harnessing technology that empowers people as active participants in their health because it will indeed take true consumer engagement to phase out a traditional fee-for-service system. In doing so, accepting and utilizing patient-generated health data (PGHD) -- which provides greater insight into patients’ overall health so providers can make more informed decisions -- will be a major piece as we make the transition.

We have seen the transformation of technology throughout our everyday lives particularly in the healthcare space with wellness apps, health trackers, bluetooth enabled home health devices and even ingestibles. With the advent of all this technology, we’ve seen an influx of data. While the data geeks get excited about the possibilities of improving healthcare with access to more data, it is cause for concern for some providers and the healthcare industry.

We have found ourselves in uncharted waters trying to marry clinical data with PGHD to paint a complete picture of people’s lives and health. So where do we go from here? The question is not whether PGHD has value in the process of reform. Rather, the issue is how to effectively, efficiently, and safely incorporate the abundance of information into clinical workflows. The only way to address this is to better understand and address the common concerns and misconceptions that render clinicians fearful of leveraging PGHD.

One of the biggest challenges with PGHD is that it encompasses so much. The Office of the National Coordinator for Health Information technology defines PGHD as “data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.”[i] With this broad definition and the broad opportunities surrounding PGHD, it is no wonder that many healthcare providers are overwhelmed with which data to use and how to use it.

As we swim in a sea of data, it is important to remember that utilizing PGHD doesn’t have to be an all or nothing proposition. It can be as simple as gathering patient satisfaction via a survey or as robust as incorporating every aspect of a patient’s care through remote patient monitoring devices, mood monitors, health journals, care plans, alerts, and other mainstream mechanisms.

In this case, physicians should follow the advice they give to patients, small steps can lead to big change. Starting simply over time allows real world feedback to guide expansion into this realm. Those of us who have seen the positive impact of using PGHD can attest to the added benefits such as increased patient satisfaction, greater insight between office visits, and more motivated patients.

With the influx of data available, it is important to understand and address provider concerns surrounding PGHD. Below are the top 5 concerns identified to date, and small steps we can take to ease these concerns as we transition into adoption.

1. Liability and Accountability - The anxiety that providers feel when it comes to accepting PGHD include the burdens of not only reviewing excessive amounts of data, but missing something important and then being held accountable because the information was technically available to the provider.

How can we alleviate this concern?

It is important to clearly define patient and provider expectations. Providing tools for patients to collect their information does not mean that the provider is monitoring that information all of the time. Adding disclaimers, consent forms, and informative, easy to understand graphics or video clips can protect providers while better informing consumers and clearly setting expectations.

2.  Privacy and Security - There is increasing interest in and demand for mainstreaming the Internet of Things in healthcare. While we interact with so many other aspects of our lives online, there are major concerns around how we ensure the privacy and security of health data. The fear of impending data breaches and hackers is realistic because the news recounts these incidents almost daily.

How can we alleviate this concern?

No one can argue that privacy and security risks should not be taken lightly, but let’s not forget that there are also risks with paper based methods for collecting and sharing health information. A good start is allowing people to decide if they want to accept the risks associated with using beneficial apps and tools to better manage and track their health. Some individuals may think the benefits outweigh the risks, as we saw at the onset of online banking. Our job is to provide tools effective enough to outweigh the perceived risks, and let people decide.

3. Data Integrity and Standardization– Providers’ need to have confidence in the validity of the data they are viewing in order to understand how to best use it. Without ensuring data is properly sourced with origin and changes or updates noted, providers will be constantly second guessing.

How can we alleviate this concern?

Once we clarify the concerns of providers by focusing on standardization, interoperability, authentication, data provenance, reliability, validity, clinical value, and workflow, then more organizations will start to utilize PGHD. The good news is that much of this work is well underway. The reality is, patients only contribute information they want to share whether it is in person at an appointment or electronically. Providers must have a certain amount of trust in the patient generated records regardless of transmission.

4. Workflow – With the numerous ways providers can use PGHD to improve care, it is no surprise that figuring out how to incorporate it into a workflow can be a bit overwhelming. It is one thing to implement technologies that support PGHD, it is quite another to incorporate it into workflows and understand how to use it. Even organizations who want to incorporate PGHD into their workflows are still challenged with the nuts and bolts of accomplishing it. They are also worried that gaps in care could occur if vital information is not seen and/or no follow-up occurs. This ties into the liability fears discussed above. Additionally, organizations face the challenge of training staff and providers on new workflows.

How can we alleviate this concern?

While many concerns are legitimate, it is important to point out that some providers simply don’t want to change. We are in the midst of a culture shift, and it is important to listen to these naysayers and provide evidence to shift attitudes and help guide providers. Accepting data does not have to hinder providers’ ability to care for patients if we can address concerns and implement the framework to make it life as usual.

5. Patient expectations - Patients, consumers, and the public in general are increasingly demanding access to health information, and we are seeing a major shift to include patients and their families as a collaborative part of care. Having the right tools and trackers to better manage our health and meaningful engage with our data is quickly gaining momentum in healthcare. It is only natural that providers are feeling a little pressure to get on the bandwagon.

How can we alleviate this concern?

It is important to set expectations for patients, custodians, and family members. We could start by simply giving patients the ability to collect their data electronically. Once all the stakeholders are comfortable with that process we could then move to incorporating that data into their clinical systems. This approach is less overwhelming and would still be a huge step forward from the traditional paper trails that are being used.

While there are obstacles we face as we roll-out PGHD strategies, we do not need to overcome them all in order to get started. Pilot programs and early adopters of PGHD are beginning to see benefits and positive results. Patients are already generating a huge amount of data and they need the providers to accept and use this data to help diagnose, treat, and care for them. The promise of PGHD to support behavior change and improved decision making is just in the beginning stages, and we are already seeing the value. Imagine the possibilities!


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