What do healthcare consumers want?
It’s not what we’re getting today.
Today Americans are faced with churning insurance plans, lock-in to narrow networks of providers, and heavily promoted Medicare Advantage plans (many with federal fraud allegations pending). We see relentless financial engineering including private equity takeover of community hospitals, hospital networks purchase of private practices, complex drug pricing and rebate schemes, brittle supply chains, conversion of mental health facilities to more lucrative specialties and promotion of low-value care. Meanwhile, many physicians and nurses are stressed, burning out, and retiring. Primary care physicians are often hard to find and specialist referrals are controlled by administrators instead of clinicians. Corporate brands are growing as we lose track of individual physician reputation. Every one of these shifts is business and profit-driven and some of our largest not-for-profit hospitals are paying exorbitant administrative salaries while driving patients into bankruptcy to pay for their care.
Transparency is the key
A review of the literature, informal canvassing, and 40 years in the pharmaceutical and managed markets arenas have made it perfectly clear to me: patients want transparency, choice, and a good medical experience. In short, they want clarity and confidence in their healthcare.
These attributes are all dependent on transparency. Transparency encompasses both administrative and clinical elements, including insured and out-of-pocket costs, physician and site of care selection, treatment options, risk/benefit assessment, pre- and post-treatment support, and numerous other patient concerns. When adequately addressed, the end result is good patient experience (the holy grail of US healthcare promises) and, ultimately, patient confidence that the medical system is there to help them over their lifetime, not rip them off.
Transparency in healthcare demands credible cost and care metrics, in formats easily understood by health care consumers (both healthy individuals and patients). Most patients considering a knee replacement aren’t aware that the cost can vary as much as 313%, depending on where the surgeries are performed. Or that social determinants of health (SDOH) such as income and education and account for 80-90% of the outcome of a medical intervention, with the clinical service itself responsible for only 10-20%. The terms “value” and “quality” in healthcare need to be specific, consistent, measurable, and visible to everyone at every decision point.
To that end, transparency demands clear, inalterable medical records that are visible to the patient as well as the clinician. Insurers should not be able to add additional illnesses to medical patient records in order to garner higher Medicare reimbursement. Patients should have unimpeded access to their physicians, regardless of location. And physicians and other clinical practitioners must be held accountable based on their credentials and reputation, rather than by proxy affiliation with a branded health system.
The American health system has been promoting the idea of “patient centricity” for decades. But unless it means truly putting patients in control of their medical records and interactions, it’s meaningless. True patient centricity demands transparency.
The solutions are within reach
Modern technology can help resolve the current state of confusion and lack of transparency. Smartphones, cloud computing, public blockchains, and reliable high-speed networks are accessible to physicians and patients without dependence on institutional hosting and support. Telehealth is making inroads into traditional capital-intensive, brick-and-mortar practice. Public blockchains allow clinicians to be held accountable based on their credentials and reputation. Smartphones like Apple Health combined with decentralized, cloud-based, open-source health records like Trustee® and NOSH enable truly patient-centered healthcare interactions. Hospitals can continue to operate their institutional information systems, but the authoritative source of truth will increasingly be patient controlled. Patient control with decentralized cooperative support will also promote access to SDOH and contribute to clearer and more equitable quality measures.
HIE of One is developing the Trustee® decentralized health record to support transparency, choice, and a satisfying medical experience
Patients can connect with their doctors or hospital directly, with no intermediary. Patients can decide who can access their records, and when, and can remove access as they see fit. They can get second opinions, knowing that their records are accurate and complete. Caregivers can be secure in the knowledge that they are prepared for a medical emergency. And they can do it all on their smartphones.
The shift away from institutional control is essential for progress on clinical outcomes, healthcare disparities, systemic resilience, and bringing US healthcare costs in line with other wealthy countries. As artificial intelligence and machine learning are integrated into medical information technology patients and doctors must be given control over this tech as open science without the restrictions of proprietary business interests.
Adrian Gropper, MD is the volunteer CTO of Patient Privacy Rights and a founder of the HIE of One project to demonstrate how patients and physicians can interact directly in the digital world without interference or surveillance by hospital or business interests.