
Patient-centered care is constantly evolving, driven by fresh insights, innovative resources, and advancements in technology and healthcare delivery.
The Quintuple Aim is a healthcare framework at the heart of patient-centered care. It broadens the focus of healthcare improvement by prioritizing health equity alongside enhancing patient experiences, improving outcomes, reducing costs, and supporting clinician well-being. The Quintuple Aim emphasizes trust, open communication, and meaningful engagement between patients and providers, reinforcing the essence of patient-centered care, and ensuring healthcare is both effective and truly inclusive. This framework helps to provide a shared meaning around the goals that clinicians, healthcare providers, and researchers can use to examine the outcomes of patient-centered care.
NORC at the University of Chicago, along with other leading research organizations, plays a pivotal role in advancing patient-centered outcomes research (PCOR). This includes studying how digital tools, such as AI, contribute to clinical decision support and improved patient health outcomes. NORC is closely monitoring the emergence of these innovative tools and the evolving policy trends that are reshaping the healthcare landscape, both now and in the future.
NORC’s research in the realm of patient-centered care seeks to demystify broader trends in the healthcare industry, which has seen significant shifts in both policy and technology over the past 15 years. According to Nundy and colleagues, these changes are driving a transformation toward a more patient-centered healthcare delivery model. As these care models shift, so do the tools and opportunities for better and more effective care that come with it.
Digital Tools
Digital tools in health IT have become increasingly important in effectively administering patient-centered care. In response to a growing need for regulation and guidance in the field, the federal government has launched numerous initiatives to improve patient engagement through digital tools since 2009. For instance, patient and family engagement was one of five policy priorities in the Centers for Medicare & Medicaid Services (CMS) Electronic Health Record (EHR) Incentive program under the HITECH Act (Health Information Technology for Economic and Clinical Health Act). Additionally, HITECH revised HIPAA regulations to grant patients greater access to their electronic medical records. These initial efforts established the essential policy and technical framework for improving patient access in digital health environments.
More recently, the 21st Century Cures Act Final Rule introduced more explicit requirements for EHR developers, mandating that they implement standards-based application programming interfaces (APIs) to enable easier patient access through applications “without special effort” by the end of 2022. As Wesley and Johnson note, this requirement, combined with the increasing availability of applications that facilitate access to medical information and enable patients to manage their health conditions, has rapidly transformed the landscape of health IT. A study by researchers at the Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT found that most patients access data through EHR apps provided by their clinicians rather than utilizing third-party apps — like Apple Health Record — that aggregate data across various EHRs and other digital tools. Digital tools in health IT are constantly evolving, presenting policymakers with ongoing and complex challenges regarding their implementation and verification.
The Impact of COVID-19
The COVID-19 pandemic further accelerated the adoption of digital tools among patients. While there was a gradual increase in patient portal usage before the pandemic, the post-pandemic landscape has seen patient portal use spike dramatically. In a recent study using the Health Interview National Trends Survey (HINTS), a stunning 57% of patients reported accessing their medical data via a patient portal as of 2022, representing nearly a 50% increase since 2020. The spike in digital tool usage has continued to hold at high levels, representing a paradigm shift in how patients access data and receive care.
The Use of Wearables
As digital and lifestyle consumer products continue to gain momentum, there is growing patient interest in sharing their health data with their doctors outside of office visits via these devices. As Glasgow and colleagues describe, the data included by patients often come from wearables (like daily step counts), medical devices (such as home blood pressure and glucose monitors), patient-reported outcomes (like health status and experiences), social determinants of health data, and personal preferences. Integrating patient-contributed data at higher and more immediate frequencies has the potential to aid clinicians in fostering more personalized care in the long run.
As we advance beyond the pandemic, we are entering a new era where artificial intelligence (AI) technologies are poised to transform patient interactions with clinicians. Generative AI, including large language models (LLMs), is already being utilized in numerous ways in medical settings. For example, artificial conversational agents or chatbots are often employed to facilitate communication between patients and clinicians in digital environments, as reported by Ayers and colleagues. These tools are already in use at major healthcare systems, like The Permanente Medical Group, where AI scribes and ambient listening devices are used to summarize patient visits for doctors and eliminate manual processes.
For patients, these AI decision-support tools provide valuable assistance by helping them understand and interpret their medical information more effectively, as highlighted in a recent systematic review. This dual capability highlights the transformative potential of AI, not only in enhancing patients’ understanding of their medical information but also in supporting clinicians with actionable insights to address broader aspects of patient care. For example, one University of Pennsylvania study showed that AI tools also have the potential to analyze clinician notes in EHRs, extracting relevant information about patients’ health-related social needs to promote equitable care — an especially important development to aid clinicians in providing patient-centered care.
The Future of Patient-Centered Care
These advancements highlight several areas for future focus and study by NORC and other researchers:
1. Establishing Robust Criteria for App Vetting: In the current API environment, there is a range of vetting processes to ensure data security and protection. While some EHR developers provide testing environments for apps before launch, rigorous testing is often reserved for provider apps, with less stringent protocols for those facilitating patient data access. We have previously shown that developing comprehensive and transparent criteria to vet all apps would benefit both users and developers, ensuring best practices in data protection.
2. Creating New Workflows for Patient-Contributed Data: Many healthcare providers currently lack the systems to receive and manage patient-contributed data. A prior study that we conducted revealed that as patient interest in sharing data with their clinicians grows, health systems will need to adopt new policies and workflows to effectively handle this information, including triaging and addressing abnormal readings.
3. Ensuring Trust and Transparency in AI Use: With the steady increase of generative AI integration and adoption in healthcare delivery, it is crucial to maintain transparency with patients regarding AI’s role in their care. An environmental scan conducted by the AHRQ-funded Clinical Decision Support Innovation Collaborative (CDSiC) revealed that patients prefer to know when AI mediates their interactions within the healthcare system. Building trust requires openness about the use and presence of these tools while ensuring that AI complements rather than replaces human judgment and relationships in care delivery.
Advancements in digital technology in health IT offer great potential to enhance patient-centered care outcomes, but it is essential to implement appropriate safeguards to maintain and foster patient trust amid these exciting developments. As the velocity of these developments continues to accelerate in healthcare contexts, more research from NORC and other research organizations is needed to discern the necessary safeguards that will protect patient data, earn trust, and provide greater care outcomes in the years to come.
About Dr. Prashila Dullabh
Dr. Prashila Dullabh serves as Vice President and Senior Fellow in the Health Sciences Department and directs the Health Implementation Science Center at NORC at the University of Chicago. A clinician informatician with over 20 years of experience, she specializes in health IT, policy, and patient-centered outcomes research. At NORC, a leading non-partisan research organization, Dr. Dullabh leads major projects for ONC, ASPE, AHRQ, and PCORI, focusing on healthcare quality, safety, equity, and data infrastructure innovation.