Industry Voices—Stakeholders need to tackle the thorny issues of corporate responsibility and transparency in handling patient data

privacy
Consumers are increasingly concerned about the management of their private data and the lack of transparency. (marchmeena29/GettyImages)

The healthcare industry is well aware of the many barriers to interoperability, from incompatible technologies to business practices that deliberately block data. The Office of the National Coordinator’s (ONC) proposed rules (PDF) on improving data access focus on these essential issues.

But as interoperability improves, issues of data ownership, availability and access will inevitably come to the fore as they have in the consumer technology world. There is no question that consumer technology companies have provided innovations that we now wonder how we could ever have lived without, but society has also learned of the risks and dangers that result from a lack of clear rules and regulatory framework on data management.

Everyone in the healthcare industry—regulators, vendors, providers and patients—must tackle the thorny issue of corporate responsibility and transparency in managing the ever-growing volume of healthcare patient data. The dialogue must be advanced now.

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The security and privacy of patient data have long been a concern and HIPAA has done a great deal to ensure it is not released or used inappropriately. However, HIPAA has also served as an easy pretext for refusing access to data that should be accessible by patients, clinicians and researchers for care coordination or to advance innovation. Remember the “P” in HIPAA stands for “portability,” an important but, it seems, neglected issue. Access to appropriately managed, de-identified, or anonymized healthcare data is essential for research, innovation and treatment.

RELATED: Complaint to FTC accuses Facebook of exposing sensitive health data in groups

Problems with data management and governance will continue to be in the news as large organizations such as Facebook struggle to control access, prevent misuse and manage consumer expectations. With Facebook’s terms of service and data policies counting close to 30 pages in length, consumers are increasingly concerned about the management of their private data, the lack of transparency and the inability to control their options, particularly for their healthcare data.

Participants in the healthcare IT and data market are certainly aware of the value of patient medical data and are already jockeying to manage access to it and to the high-value analytics products that will be built around it.

Large healthcare IT companies, like the few remaining large electronic health record incumbents, have made vast historical investments to control and manage proprietary technology and data. However, they are facing new challenges to their fundamental business models. These include the movement to the cloud and the corresponding impending risk of commoditization of these solutions and the new ONC rules that require data sharing and prevent information blocking.

RELATED: Collection, use of consumer data puts sensitive health information at risk, groups say

This part of the industry will either move to actively commercialize data they have access to or perhaps be delegated to a role as a low-cost platform that new entrants will monetize data upon. As a result, these entities are now investing heavily in developing new capabilities of their own, moving into the cloud and ensuring they can curate, query and analyze the data they have.

The success of this effort requires greater interoperability, as outlined by the ONC. However, will it stop short of achieving the objectives of transparency and access for patients?

Those with an interest in free data exchange need to work hard to ensure that it will not be just a few large companies that see most of the benefit. This effort needs to primarily focus on benefitting patients directly and not first benefitting companies with access to that data.

Legislators and regulators need to view healthcare data accessibility as a public health issue. Like the effort to reduce smoking, this will have to be a long and sustained effort and one that takes special care to support and protect the most vulnerable patients, in the same way, that we limit the marketing of tobacco to minors.

RELATED: Senate privacy bill aims to set new federal standard for consumer health apps

If the industry does not make the effort, five or ten years from now the system might be different but still inadequate. It would be tragic to again push what is perceived as change only to look back and wonder how things went so wrong.

To prevent that, the following areas must be prioritized:

  1. Maintaining sustained attention on how healthcare data is acquired, accessed, and used by major players in the market: Companies today have dozens of ways to access an individual consumer’s data that the consumer is unaware of. The industry hasn’t managed to reconcile confidentiality and access in a way that healthcare professionals can understand and use, much less that allows for patient education. 
  2. Ensuring patients and consumers understand and can engage adequately with their own healthcare data: This data and its uses will only grow more important over time, so the sooner understanding and participation come, the better.

Patient healthcare data must be both secure and easily accessible for research. This combination will not happen by chance. It will need legislation, regulation, pressure on the industry, supervision of large industry incumbents, regulatory and consumer oversight and public education.

All of this will require consistent effort over several years. If the industry doesn’t make a sustained effort, it risks handicapping patient care, informed consent, clinical research and true innovation for decades.

Matthew Michela is president and CEO at Life Image. Matthew is an ardent advocate of democratizing healthcare data and creating a connected view of the patient journey. 

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