Top health industry issues of 2020: Consumers inch closer to DIY healthcare

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In 2020, DIY healthcare takes on new meaning as American consumers will begin to finally reap benefits from the enormous investments in data collection, storage and analysis that have been made by the US health industry. Beyond offering them tools to monitor their vitals, at-home devices to test for strep throat or flu or personal health records that consumers themselves must populate, companies are building business models around giving consumers access to their own data, with insights attached. New entrants are pulling together electronic health records, claims data, steps, lab work, sleep patterns and more to give consumers a holistic view of their health and where it is heading.

Companies now are using data to help consumers make better financial decisions around care. They are giving them more access to clinical trials, thanks to genomic information collected by consumer-facing genetics companies. At long last, American consumers are gaining some control over their health data and using them to make better decisions about their health and finances.

This is a key step in the consumerization of the US health industry, and one that has been mostly fueled by tech companies, startups and new entrants. Traditional healthcare organizations have made strides in using personal health information to improve the consumer experience and have given millions access to electronic health records through patient portals.[i] But they have so far been reluctant to give patients total control.

True or false? Across all industries, the biggest obstacle to monetizing data is lack of analytical talent.

False! While 30% of executives cited lack of analytical talent as an obstacle to monetizing data, poor data reliability topped the list (34%).

In 2020, traditional health organizations may find themselves pressured by consumers and these new players seeking more information, and they also may find opportunities in granting more access. Take Ciitizen Inc., which uses federal HIPAA requirements to request and extract EHR data to allow consumers to pool medical information from multiple providers and seek second opinions. The Palo Alto, California-based company also mines the data for potential insights and earns a fee by putting consumers in touch with companies interested in purchasing access to that data.[ii]

Other companies also are financially rewarding customers for their data. For example, DNA sequencing firms NantOmics of Culver City, California, and Nebula Genomics of San Francisco allow consumers to opt into having their DNA test results used in research studies, for which consumers receive compensation. These companies’ success will depend on whether consumers are willing to hand over their data and whether other health organizations will pay for the information.

Apple Inc. is betting that consumers will want all of their health data in one place and that that will increase the value — and sales — of its products.[iii] According to Apple, the Cupertino, California-based company has agreements with 200-plus providers, from solo podiatrist practices to large, internationally recognized academic medical centers, allowing patients to download their EHR data to Apple phones and other devices.[iv]

Mountain View, California, consumer genetics company 23andMe in 2019 announced a partnership with TrialSpark, a clinical trials technology firm, to allow the use of its genomics data to support clinical trial recruitment by life sciences companies.[v]

“23andMe has a large database of highly engaged customers and patients that have consented to being contacted for research,”[vi] said Dr. Praveena Kandula, head of strategic operations and strategic partnerships at New York City-based TrialSpark, in an interview with HRI. “But now what’s possible with this collaboration is that we can help put trial sites in the neighborhoods where patients are. Historically, patients would be referred to a trial site. I hope that this collaborative model is going to be able to make clinical trials more accessible and faster, and help get medical treatments to patients more quickly.”[vii]

Despite exuberance over the potential of data to disrupt healthcare, companies must also be mindful of the hurdles to the use of their data. Across all industries surveyed by PwC, key obstacles to monetizing data include poor data reliability (34 percent), data protection and privacy regulations (33 percent), an inability to adequately protect and secure data (32 percent), and a lack of analytical talent (30 percent).[viii] Healthcare executives told HRI that they are mostly focused on using their organization’s data in more effective ways.

Figure 5: Cybersecurity and privacy are seen as major barriers to digital strategies


Third parties are of particular concern regarding data security and privacy

When it comes to making use of their data, few companies are able to go it alone. They may have limited internal capabilities, lack data science talent on staff, require contract services to store or send data, or rely almost entirely on contractors to conduct research on their behalf (see Figure 5 above).

These relationships help drive efficiencies, but they also leave data open to breaches.[ix] In the same way that banks require their vendors to meet specific security compliance measures, so, too, should companies require — and audit — adherence to security standards. Contracts should also require vendors to alert a company to any data breaches promptly, and companies should have retainer agreements in place with cybersecurity firms to respond if an event is found to have taken place.

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Know that privacy standards vary for business partners

Some nontraditional health companies and new entrants — such as companies offering patient portals — are not bound by the same privacy standards that are outlined in the Health Insurance Portability and Accountability Act.[x] This can lead to the use of individuals’ data, such as for marketing purposes, without their consent.

To gain consumer trust, health companies also must evaluate the effectiveness of their data de-identification processes to reduce or eliminate the risk of the data being re-identified.[xi]

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Watch out for risks related to data representation

When asked during PwC’s 180 Health Forum about the extent to which emerging technologies such as genetic testing have penetrated healthcare, Ellen Jorgensen, co-founder and chief science officer at Brooklyn, New York-based Carverr, cautioned that they have only for certain populations. “There’s already a certain built-in inequity going on; part related to money, part to trust,” Jorgensen said. “A lot of these great technologies are coming, but they aren’t coming in the right way for some people.”[xii]

The risks of poor data representation can be magnified as sets are fed into AI projects. As the data economy grows, inequities of the present could extend into the future if engineers and companies fail to find datasets that are as diverse as the population that will eventually use the tools. “If you want your algorithm to work well on a general population, for example, you’ll want an equally diverse mix of people in your research,” according to an article in Wired exploring payments to consumers for their health data. “[The] value for someone from a group often left out of clinical studies — say, women of color — might be relatively high in some cases. White men, who are often overrepresented in datasets, could be valued less.”[xiii]

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Benjamin Isgur

Health Research Institute Leader, PwC US

Karen Young

US Health Industries Leader, PwC US

Glenn Hunzinger

US Pharmaceutical and Life Sciences Leader, PwC US

Gurpreet Singh

Health Services Leader, PwC US

Michelle Lee

Health Industry & Pharma Life Science Tax Leader, PwC US

Greg Rotz

US Pharmaceutical and Life Sciences Advisory Leader, PwC US

Tim Weld

US Health Industries Assurance Leader, PwC US

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