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Personalizing the Digital Data Revolution in Healthcare

Surabhi Dangi-Garimella, PhD
How valuable are digital data collection tools in healthcare and what do they mean to the patient? Are they helpful or is this revolution merely a hype? These were some of the discussions during the plenary session on the second day of the International Society for Pharmacoeconomics and Outcomes Research 23rd Annual International Meeting.
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In an attempt to maximize on real-world evidence in real time, the digital technology space within healthcare has seen a massive boom of late. Starting with wearable devices and smart devices to directly collect data from patients to ways to consolidate the information and analyze it, digital tools are having a significant impact on our healthcare system. But are these tools really helping our system or is it mere hype?  

During the plenary session on the second day of the International Society for Pharmacoeconomics and Outcomes Research 23rd Annual International Meeting, held May 19-23 in Baltimore, Maryland, experts addressed several questions evaluating the significance of digital technology on healthcare:
  • Does the empirical evidence confirm that digital health has actually improved public health?
  • What evidence is there regarding the global impact of digital health on research?
  • Has digital health helped to close health disparities’ gaps?
  • What are ethical concerns surrounding tracking health data and how are they being managed?
Moderated by C. Daniel Mullins, PhD, professor and chair, Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, panelists included Chris A. Jones, DPhil, MSc, FRSM, network director of Venture Investments, University of Vermont Health Network; Ejim E. Mark, MD, MPH, MBA, chief executive officer and founder, Access Healthcare Foundation; Nadia A. Sam-Agudu, MD, assistant professor, Pediatrics, Institute of Human Virology and University of Maryland School of Medicine, and senior technical advisor, Pediatric and Adolescent HIV, Department of Prevention, Care and Treatment and International Research Center of Excellence, Institute of Human Virology, Nigeria.

Mullins highlighted the importance of digital technology and digital tools in our daily lives by pointing out that he was wearing a watch that winds up…unlike digital wearable technologies that have invaded the market and have functionalities way beyond just showing time.

Mullins was trying to drive home the important role of these devices in our daily lives, and particularly in healthcare. “A lot of individuals I work with [in Baltimore] are underrepresented, and their information is not in the data sets we use,” he said, adding that many of these individuals are not sold on the idea of sharing their health information because they don’t believe it will help them in return. “So, when is this data helpful and when is it just hype?” Mullins asked his expert panelists.

While Jones believes it is both helpful and sometimes hyped, Mark’s perspective is that the digital revolution in healthcare remains in it’s infancy, “so the thought is that it is a hype.” He said that the field needs to develop more for its value to be realized.

Sam-Agudu, who spends a significant portion of her time working among pediatric patients with HIV in Nigeria, said that digital health information is perceived as being a hype, especially in that nation, and patients and maybe even healthcare providers look at it in a more cynical way.

This might be one of the reasons why data acquisition is associated with practical and pragmatic issues. “I have a lot of issues with gathering patient data,” Sam-Agudu said. When a patient visits a clinic, and the physician is busy looking at a digital device to input patient responses to a series of questions, the patient may feel disconnected from the physician due to a lack of a more personable conversation.

While physician extenders can participate in the process, “patients may not be as comfortable speaking with their provider in the presence of another body in the room,” Mark said.

The conversation then moved toward strategies for incentivizing patients to share their health information with providers. “What are appropriate incentives to get people to participate knowingly,” Mullins asked.

According to Sam-Agudu, context matters. “While you are gaining data, how much do client or patients benefit from sharing this information is important to consider.” She emphasized the importance of risk/benefit conversations when gaining informed consent from patients. “The incentive in that scenario is immediate benefit or explaining that there will be incremental benefit for the patient and his/her immediate society.”

Mark raised the data safety concerns that people have been alerted to, particularly following the recent buzz around the safety of people’s Facebook data. “People want to know their information is safe,” Mark said, but the more data we can accumulate, the more precise we can be with our analysis and interpretation of it.

Researchers need to be cognizant of the fact that imminent value of this information may not sound attractive to patients. “Getting a reward at the end of the year is not relevant. How can they be rewarded for sharing their data now?” said Jones.

Even if the value of the reward is miniscule, it news to be relevant to the individual, he added, providing an example of a program that rewards drug users who share their information with free needle exchanges.

For those who volunteer to enroll on clinical trials, the reward is access to a new medication or treatment, Mark said. He, too, emphasized the need to individualize the rewards: “It can be gift cards, or discount cards to grocery stores…it just depends on who your target population is.”

Another important question that Mullins raised is provider buy-in. “How do we incentivize care providers to participate in the process?”

Sam-Agudu’s strategy in her clinics is to create a health competition, particularly around quality-of-care metrics, such as wait times. She narrated that she casually slips numbers, such as a competitor clinic’s wait times, in her conversations with clinic staff. “Once they take it upon themselves to improve their performance, the achievements are recognized with a plaque.”

How do you ensure that the patient voice is filtered out of all the noise in the data, Mullins asked?

Jones cited an example of their work with native Indian populations saying that “We have struggled with ensuring we have relevant data for this population. Its important to understand the community’s priorities because they may not be sharing this information openly.”

Buy-in and engagement is vital. “Often, it’s a question of how well you engage these communities,” Sam-Agudu said. “Once you do that successfully, it’s surprising how much they are ready to share with you. For my constituency, primarily mothers of young children, they need transportation and access to available and affordable healthcare.” She explained that government participation is vital for being able to achieve these infrastructure requirements.

They all agreed that “knowing the audience” is the first and most important step.

The panelists agreed on some ethical dilemmas that they face with the digital data that they handle. “The value of all of my information that is autonomously captured is important, but there’s also the downside risk of it being placed in the wrong hands,” Jones said. In Nigeria, however, there are no proactive measured or laws in place for data privacy, and Sam-Agudu’s major concern is the reactionary attitude to such crisis. “Transparency is key on what the data are being used for,” Mark said.

The panelists then shared futuristic closing thoughts with the audience.

“Having a ‘digital twin’ completely mapped out is not a far-fetched thought anymore,” said Jones. He believes that’s an exciting frontier that will be regulated by affordable whole-genome sequencing.

“There can be many apps of digital health technology that can work for people depending on their location, either rural or city-dwelling,” said Sam-Agudu, “and we need to be realistic about the population we are dealing with.”

Mark advised the audience to be a part of the data revolution “Because your data are being collected even if you don’t want it. So be a willing participant in the story!”

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