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Research Spotlight

"How can we get the right information in the hands of care team members and patients so they can have what are often very difficult conversations and pick out the right treatments?”

Christopher A. Harle, Ph.D.

Professor of Health Outcomes and Biomedical Informatics & Chief Research Information Officer – University of Florida

“There’s a real gap in terms of how do we better support treatment in between clinic visits, and in a way that people can actually—on a day-to-day basis— implement.”

Kimberley D. Lakes, Ph.D.

Professor of Clinical Psychiatry and Neuroscience – University of California, Riverside

“I could see the potential of [technology] for patients to use for self-management and for us to collaborate, physicians and patients and nurses, on ways to make care better.”

Valerie Press, M.D., M.P.H., FACP, FAAP, SFHM, ATSF

Associate Professor of Medicine and Pediatrics & Executive Medical Director of Specialty Value-Based Care – University of Chicago

Engaging Patients and Caregivers More Fully in Care Decisions and Actions

These are the voices of Principal Investigators leading AHRQ-funded studies to engage patients and caregivers more fully in care decisions and actions. They are researchers who understand how improved conversations can result in better care. They want to help clinicians tap into that rich trove of information—what patients want from treatment, what they and their caregivers can and will do to manage their health. And they want clinicians to be able to send patients home with tools to help.

AHRQ’s Digital Healthcare Research (DHR) program recently funded 24 research projects to explore ways in which clinicians might use technology to engage patients and caregivers in shared decision making and in treatment.

These studies span patient populations, care settings, and critical moments in care. Examples include children with attention deficit hyperactivity disorder (ADHD) and their parents and teachers, patients/ caregivers navigating hospital discharge, patients with multiple chronic conditions, elders over 75 and their care networks, and many others.

All AHRQ-funded studies put patients and caregivers at the heart of the research. Their findings offer valuable insights for clinicians, payers, vendors, patient advocates, and others with a stake in healthcare and health technologies.

Technology and Data for Better Conversations

The common elements connecting these studies are the patient’s health data—whether collected via commercial wearables, patient portals, or clinical tools. Once captured, these data must survive multiple hand-offs—from patient or caregiver to clinician, and between members of their care team. Each hand-off represents a chance for a conversation. Each hand-off represents an opportunity to activate the patient/caregiver, establish trust, and inform care decisions. Each hand-off also represents a human and technological challenge. These hand-offs also represent a chance to augment clinical data to aid in diagnostics and care.

The continued rise of digital health apps and wearables means these handoffs are increasingly likely and the dataset is more complete. As many as one in five Americans use consumer technology to track health behaviors and metrics, including diet, exercise, heart rate, temperature, sleep, and more. Though encouraging, this adoption is not universal, with fewer than 44 percent of adults 65 and older tracking health measures at all.

Clinical tools that collect patient-reported outcomes (PROs) have also gained traction with patients, who reported high satisfaction with ease of use and felt increased reassurance around their care. Patients felt more supported, while simultaneously providing more information to clinicians to guide their care.

Patients, healthcare systems, and payers benefit when clinicians gain insight into the patient’s condition—ideally from the patient’s device of choice. Encouragingly, most electronic health record (EHR) systems allow direct intake of patient-generated data, but human and process barriers remain.

For example, a study of patients with hypertension found that while many measured their blood pressure at home, only half of those patients actually shared the data with their physician. When they did, 88 percent of their physicians manually entered the numbers in the patient’s record as unstructured, narrative data.

Why does this matter? Information buried in clinical notes is far less useful because it cannot be aggregated or graphed over time. This represents a major missed opportunity: data visualizations can support shared decision making, helping patients/caregivers and clinicians spot values outside of a target range and balance speed and accuracy when reviewing the information. Data visualizations may also improve care and outcomes by helping patients and caregivers manage chronic conditions and reduce drug interactions.

Evidence-Based Guidance and Tools for Clinicians

Actionable results are available in two comprehensive resources designed to help healthcare systems and clinics integrate patient-generated health data into practice. One is a practical guide for ambulatory care practices, offering insights drawn from the literature and best practices shared by the community. The guide aims to help clinics address issues such as staff and patient readiness, technology security, billing, and reimbursement. The other is a first-of-its-kind web-based toolkit to help health information technology (IT) stakeholders design, integrate, and evaluate technologies for capturing PROs.

Since publication, these resources have been accessed more than 8,200 times, a clear indication of the growing interest in patient-generated health data. The demand for these resources also signals the potential opportunity for these technologies to help engage patients and caregivers in decisions and care—if they are designed with this goal in mind.

The Need for Continued Funding

Clearly, digital healthcare technologies have tremendous potential to activate patients and caregivers. They make it easier to share insights, inform decisions, energize conversations in the clinic, and even support treatment.

As good research always does, our efforts also uncovered questions to tackle with future funding. For example, an environmental scan found a need for research to explicitly connect use of digital healthcare technologies to improved outcomes. Future research must also further examine how technology use affects health inequities. Some guidance exists to help clinics build health equity into digital programs, but much work remains to formalize best practices related to access, digital health literacy, translation, and accessible design.

Still, these ARHQ-funded studies accomplished a great deal to advance technology use in service of patient and caregiver engagement. With these evidence-based insights, vendors can improve clinical platforms and patient apps; healthcare systems and clinicians can make informed technology choices; and patients, caregivers, and patient advocates can evaluate clinicians based on those choices.

As we pursue advancements in healthcare safety and quality for all Americans, ARHQ will continue to champion the promise of digital healthcare technology to engage patients and caregivers in care and treatment—one patient-centered study at a time.