Trust in Data Stewardship Is Healthcare’s to Lose – Reflections After HIMSS19

By Jane Sarasohn-Kahn, MA (Econ.), MHSA and THINK-Health, Health Populi Blog; a HIMSS Social Media Ambassador

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Jane Sarasohn-Kahn, MA (Econ.), MHSA

The day before HIMSS19 kicked off, Seema Verma, director of the Centers for Medicare and Medicaid Services, unveiled a proposal for new information blocking and interoperability rules. In addition to addressing the chronic challenge of EHR data liberation, these new rules would also support the most talked-about concept at HIMSS19: the adoption of artificial intelligence in healthcare.

Personalizing healthcare from the mashup of data well beyond the patients’ personal health information for which a doctor, a hospital, or pharmacy has signed a HIPAA contract as a covered entity or business associate agreement.

To consumers, the doctor is, by far, the most trusted personal data steward in the person’s life – ahead of a bank, and well before the consumer’s favorite retailers, government agencies, grocery stores and charities. We learn this from a report from the Data & Marketing Association and Acxiom, Data privacy: What the consumer really thinks.

Image source: Acxiom

Image source: Acxiom

Key Takeaways from HIMSS19

Watch Sarasohn-Kahn talk with HIMSSTV about how the industry has miles to go before public policies align with social determinants of health, but the increasing pace of change is encouraging.

Several insights gleaned during HIMSS19 informed my perspective on the issue of patient privacy and the growing health data ecosystem:

  • Providers’ embrace of artificial intelligence and personalized healthcare is going mainstream, based on both HIMSS19 education programming featuring an entire day on machine learning and AI, along with exhibitor activity on the show floor.
  • In a growing value-based payment environment, providers are keen to access data beyond the traditional healthcare claim, incorporating information on peoples’ daily health and fitness, buying patterns at retail, and social determinants of health which were brainstormed throughout the conference.
  • Both providers and patients have begun to ask important questions about AI and algorithms that, before now, were largely the purview of bioethicists and lawyers. These were identified in an important JAMA viewpoint inventorying key themes, such as, “what are the right data for AI?” “What is the right evidence standard for AI” and “what are the right tasks for AI in health care?”

Maintaining Trust

Preserving trust between patients and providers for protecting peoples’ privacy is a team sport: by definition, the health data ecosystem involves traditional healthcare touchpoints, adding in new sources of fresh and useful personal data from retailers, gyms, grocery stores and everyday living via peoples’ phone GPS pings and social network check-ins, as well. A cautionary tale on the latter was published in the Wall Street Journal last month featuring a woman’s sensitive health information that migrated from a social media platform from a mobile health app’s software development kit.

Consumers using social networks and apps need more granular, accessible knowledge enabling them to opt into these tools, understanding and controlling where personal data get routed beyond the original context in which their information was shared. In our current landscape, we need privacy assurance that goes beyond HIPAA, which was conceived in the pre-smartphone and app era.

How can providers retain this trust with patients in an era of increasing medical breaches and data hacks in healthcare? We see green shoots of activity among some providers and tech suppliers beginning to define and curate health apps and tools that (1) are effective and (2) respect peoples’ empowerment, control and privacy. The Stanford Libraries published a Statement of Guiding Principles for Ethics in Digital Health which speak to working toward patients’ interests, health outcomes and values. “Patients should be actively engaged in the community that is shaping digital health products,” is the 10th and final guiding principle on the Stanford list.

This is the ethos that should be central to ensure the continual nurturing and retention of trust between patients and providers. In a paper on developing a framework for increasing trust between patients and the organizations that care for them, Thomas Lee, MD, MSc; Elizabeth McGlynn, PhD, and Dana Gelb Safran, ScD; wrote, “Because of changes in health care and society at large, trust is increasingly understood to be at risk and in need of attention.”

We are at a crossroads in American healthcare when it comes to conserving that trust. Without it, the promise of personalized healthcare driving outcomes, equity and lower costs will be squandered.

The views and opinions expressed in this blog or by commenters are those of the author and do not necessarily reflect the official policy or position of HIMSS or its affiliates.


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Originally published April 9, 2019