June 6, 2019

Healthcare Fragmentation: Focus on the Patients, and the Data will Follow

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A version of this article article was posted to the blog of the Office of the Chief Technology Officer for the U.S. Department of Health & Human Services (HHS.gov), and the Regenstrief Institute website.

The syndicated article is titled, “IHS Modernization: Focus on the Patients, and the Data will Follow” and focuses how this applies to the context of Indian Health Services Modernization Project in the USA, and the American Indian/Alaska Native populations that IHS serves.

The version below is generalized to healthcare in America.

Thank you to Dr. Theresa Cullen, MD for assisting in this work, and Dr Alain Beaudry for his suggestions.

Healthcare in America is a pairing of extremes. When ranked, the United States has some of the very best and the very worst healthcare metrics. Cancer survival remains the highest of any country, yet maternal deaths and infant deaths rank the worst of all developed nations. Americans are able to spend twofold more per capita on healthcare than the OECD average, yet still end up with one-in-four patients who underuse their lifesaving insulin because of costs.

How can America develop an exemplary health system? What do patients, providers, payers, and the public need to focus on to strengthen care in America? The treatment lies in fixing fragmentation.

Fragmentation: Patients & Caregivers

Patients with chronic conditions experience the effects of fragmented care most acutely. They endure the worry of not knowing the next step in their care, the breakdown in communication between care providers, and the lack of continuity of care that results in lost paperwork, redundant testing, and poor outcomes.

When patients and their caregivers try to become more involved, often they are met with difficulty obtaining their medical records. This barrier exists despite a decade of evidence through the OpenNotes trials that demonstrate the powerful benefits of permitting patients full access to their records.

Fragmentation: Providers

Each year, healthcare becomes more complex as patients receive concurrent care from a larger healthcare team spread across an increasing number of facilities and providers. This expansion presents a pressing need for tools that improve communication, data exchange, and task distribution across an evolving healthcare ecosystem.

Clinicians experience the effects of data fragmentation twice. First, inadequate advancements in data interoperability and exchange leave data stranded as patients move between care settings. Second, many electronic health record systems further fragment information across multiple tabs and windows through poor user interface designs. This leads to clinicians having a partial picture of the patient's medical story.

Clinicians were optimistic that the electronic medical record would reduce administrative burden, improve the quality of their work, and allow them to provide better care. However, in many ways, the opposite has happened. See further, Why Doctors Hate their Computers, and Death by a Thousand Clicks: Where Electronic Health Records Went Wrong.

Fragmentation: Payers

American healthcare markets are traditionally opaque and obfuscated in pricing transparency, making it difficult to compete directly on cost and quality. An optimal healthcare market should prioritize generating health. Such a marketplace requires a high level of data transparency between supply side and demand side forces, as well as stronger alignment of incentives between patients and payers.

Fragmentation: Public & Population Health

Public health and population health cannot function in  silos. Advanced public health tools, such as the ability to predict and track disease outbreaks, public health threats, and drug side-effects are only possible through the integration of semi-real-time aggregate data.

Population health improvement, with a focus on education, prevention, and high-value health care interventions, require linked outcome data to measure effectiveness and understand where the best interventions are.

Healthcare fragmentation is not just a public health threat, but also an economic burden for communities as well as individual patients.

The Opportunity of Innovation

Patients and their families deserve seamless care during their times of sickness and in health. Health and healthcare follow individuals throughout their entire life; medical records should too.

This challenge presents a significant and honourable opportunity for entrepreneurs, innovators, and everyday citizens. Solutions must start with the patient and the community. The desire to provide high-quality, compassionate, patient-centered care must lead to information, operations, and logistics systems designed to support this goal.

However, this high-empathy vision is only possible with novel and appropriate technology solutions.

We must insist upon a care-first and patient-first medical record design. We must promote electronic health record technology and standards that prioritize data portability, access, population health and equity.

The potential for advancements in clinical information systems to provide users with advanced clinical decision support will enable patients, families, and healthcare professionals to provide care with a new level of medical expertise, precision, and safety.

Lets highlight the benefits to patients, providers, payers, and the public of human-centered health information systems and their ability to help build an integrated care system

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