Will Patient-Generated Health Data Change the Face of the Pharma Industry?

Data discrepancies caused by missing patient data is a well-known phenomena across the Pharma Industry (for an elaborate account see this article). But, it seems technology, along with a variety of health-care related government initiatives such as the ACA (Affordable Care Act) or the ARRA (The American Recovery and Reinvestment Act), etc., are creating a new trend aiming to change the familiar processes of gathering patient health data.

The way patient-centered information was gathered by healthcare providers in the past, and to a large degree still today, is mainly through traditional chart audits, surveys and prescription data. However, with today’s nascent EHR’s providing population data, a door has opened to a new model of gathering patient information: Patient-Generated Health Data. Fundamentally, what this PGHD model means is having patients voluntarily providing health information, allowing real-time interaction with the health care system.

Without getting too mixed up with the whole chicken or the egg paradox, it seems the evolutionary development of EHR’s (electronic health record) was followed by a wave of federal legislation aiming to regularize the new massive patient-centered health data exchange. But, the shift to PGHD is happening fast on the ground, even before the Meaningful Use Stage 3 has been finalized (the 3rd stage of the CMS Medicare and Medicaid EHR Incentive Program) as part of the HITECH Act.

Patient-Generated Health Data

Patients are already using PGHD technologies such as wearables, medical devices and even patient lifestyle tracker mechanisms, while mHealth (mobile health) seems to be one of the key enablers of Patient-Generated Health Data, being so widely used by U.S. citizens, today.

In fact, a Health Fact Sheet by the Pew Research Center indicates that “31% of cell phone owners, and 52% of smartphone owners, have used their phone to look up health or medical information.” But, what’s even more fascinating is that 19% of those are using their smartphones to actually track their health through various apps.

Patients today are sharing more and more of their health information. Pew Research Center’s Fact sheet shows that 7 in 10 U.S. adults have tracked a health indicator for themselves or for someone else. Of those, 34% share their health tracking records or notes with another person or group and 3-4% of internet users have posted their experiences with healthcare service providers or treatments.

These stats show particular promise to the Specialty Pharma industry, as people living with chronic conditions and caregivers are more likely than other adults to track health indicators, more likely to track in a formal way, and more likely to report that it has had an impact on their health.

In other words, it seems patients are clearly eager to experience these types of services, and share their Patient-Generated Health Data, even before the different acts are being regulated.

How is this to affect the Pharma Industry?

This development has huge potential to enrich the Pharma Industry with the patient-centered health data it so desperately needs; health history, treatment history, biometric data, symptoms and lifestyle choices and more.

But, what’s more, these are all distinct from the traditionally generated data, gathered from clinics and through providers, in two main aspects:

  1. Patient-Generated Heath Data is data generated by the patients themselves; they are the ones tracking and recording themselves.
  2. The patients are also the ones responsible on deciding how to share their health data (mobile apps, wearables, etc.) with different health care providers.

Apart from the significant bettering of drug test results and patient conditions, the use of PGHD offers the Pharma Industry an opportunity to capture needed information for use during care, with potential cost savings and improvements in quality.

The use of Patient-Generated Health Data essentially can supplement existing clinical data, by filling in gaps of information and providing a more comprehensive picture of ongoing patient health: it can provide data on patients’ condition between medical visits; gather data on an ongoing basis; and also provide data on preventive and chronic health management.

Pharma thinking out-of-the-box

So, in other words, pioneering companies should start thinking about ways to engage with PGHD, even though the industry is still struggling to shift to an outcome/value model and has yet to fully engage in EHR integration and population data.

Out-of-the-box thinking could create cooperation and partnering with wearable devices manufacturers for example, to marry population data with EHR’s and get a better sense of how patients live their lives outside of the physician’s office. New strategies might lead to tracking the experience of patients on a particular drug vs. lifestyle choices, and supporting them with complementary mHealth apps, to ensure positive outcomes.

These are just a few examples of where the Pharma industry could take this. There’s a great chance the shift to Patient-Generated Health Data will change data exchange processes in such a fundamental way, to define new interactions and relationships between the patient and healthcare providers all together.

So, what’s in it for Pharma?

To put it simply, as these technologies expand, Pharma companies will have the ability to truly understand and meet the needs of the patient, be it in strategically developing the commercial pipeline towards unmet needs, or improving outcomes through mHealth support.

Eventually, Patient-Generated Health Data might just lead to that Holy Grail so sought after in Pharma – a full view of the patient, fully integrated into the healthcare system. No more data discrepancies, just a clear view of the patient health condition waiting to be analyzed.

So, are you fully prepared for the coming change? Is your company ready to shift to PGHD?

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