5 Key Factors to Successfully Leveraging Person-Generated Health Data

07 October 2021

FiercePharma

To improve outcomes and care delivery, personalized medicine is the ideal from the point of view of patients and clinicians alike. Digital health tools and wearable devices play a critical role in helping to make personalized health a reality. These instruments capture person-generated health data (PGHD), which is health-related data created, recorded, or gathered by individuals or by their family members and other caregivers. Personal information may be reported directly and continuously at home or on the go using a variety of digital tools, including wearable devices or phones, apps, and electronic surveys. This data is often viewed as the missing puzzle piece needed to provide a holistic, 360-degree view of the patients’ lived experience outside the clinic walls.

PGHD represents a big shift from traditional real-world evidence studies, which have been centered around data recorded during visits to a healthcare facility or generated by insurance claims. With PGHD, the question isn’t how well the average person is doing, but what outcomes an individual patient can expect when using a particular product or trying a new treatment strategy. 

“I am a strong believer that person-generated health data is a better way to measure health in everyday life for patients,” commented Bray Patrick-Lake, senior director of strategic partnerships at Evidation. “It’s critical that we measure health outside the clinic because that’s where patients live their lives versus the minute amount of the time they spend in clinical visits or hospital stays.” 

Evidation has been at the forefront of efforts that use digital tools to better understand patients’ experience with health and disease and to foster behavior that improves quality of life and health outcomes.

One example of a real-world application of Evidation’s approach is a new collaboration with the American College of Cardiology (ACC) to jointly develop a patient engagement program aimed at improving heart health. During a March 10 webinar hosted by Evidation, John Rumsfeld, Ph.D., M.D., Chief Innovation Officer and Chief Science and Quality Officer at the ACC, commented that given the choice, we would never design a health system like the one we have now. 

While revamping structures that have been in place for several decades is a tall order, the rapid adoption of virtual healthcare during the COVID-19 pandemic shows the possibilities for change. 

That is not to say that there haven’t been challenges along the way. Evidation’s experts have identified five core necessities to enhance the adoption of PGHD.

VALIDATE DATA, BUILD CLINICIANS’ TRUST

Data reported directly by patients about their own well-being promises to be a treasure trove for filling in the information gaps between patient visits, while also having the potential to nudge behavior toward better outcomes by providing actionable insights that help get patients on the right treatments faster. The COVID-19 pandemic helped speed the adoption of telehealth, patient-reported outcomes (PROs), and remotely submitted data exponentially.

“But if the data reported by patients is deemed to be unreliable, the reputation of patient-centered healthcare is hurt,” commented Mikki Nasch, Co-Founder and VP at Evidation. One of Evidation’s key missions is to ensure that data provided is not only accurate but also provides actionable insights and context for both the patient and the clinician.

The collaboration with the ACC is an example of the importance Evidation places on building the evidence base, incorporating clinical pathways that have been developed by experts through a professional society. Whether working with a medical society or a pharmaceutical company, Evidation takes an evidence-driven approach to everything it does in healthcare — virtual or otherwise — and translates this experience to deeper engagement with patients.

Using Evidation’s Achievement platform, which includes an app that engages more than four million individuals, the collaboration will initially design an experience for patients living with heart failure.

MANAGE DATA OVERLOAD

Explosive growth in the adoption of wearables by consumers has raised concerns about medical false alarms or false positives. During the Evidation webinar, Rumsfeld noted that cardiologists are interested in person-generated health data, but there is a “lot of rightful concern” that they will get too much raw data and wind up being deluged with information. “Technology solutions can be designed beautifully for consumers, but they will fail if they are not also crafted for the clinicians, and algorithms can help,” he said. 

“We still will have to be careful about not having data or information overload,” Rumsfeld said. “But the key is designing with clinicians in mind.”

Evidation’s approach is to use algorithms aligned with clinical guidelines that reduce the noise in datasets and to offer separate sets of summaries with measurements that matter to the patient as well as measurements that matter most to the clinician. Reports include data on a variety of measures, including weight, activity level, patient-reported outcomes on quality of life, and how patients are feeling, thus delivering actionable insights to both patient and clinician.

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