Research shows that patient engagement in healthcare can lead to measurable improvements in safety and quality. To advance stronger engagement, AHRQ funds research to help patients, families, and health professionals to work together as partners in promoting care improvements. AHRQ continues to be a leader in the advancement of mobile health applications (apps) and innovative ways to improve patient health through technology and personal health information management (PHIM). In 2019, program investment in grants and contracts to improve patient engagement and shared decision making was $43 million over the duration of the projects. The following research exemplifies some of AHRQ’s recently completed patient-focused research.
Personal Health Information Management
Personal Health Information Management has been defined as an activity involving the integration of personal, professional, and health-related information. PHIM helps people actively participate in their own healthcare. When supported by digital healthcare, consumers can access information to manage their health. The following research highlights key achievements in AHRQ-funded PHIM research:
Dr. Gretchen Jackson from Vanderbilt University examined the health-related needs, information-seeking behaviors, and information-management practices of pregnant women and their caregivers. The research uncovered that pregnant women and their caregivers have a diverse set of unmet informational, medical, logistical, and social health-related needs. Among the most notable was the need for pregnancy-related digital healthcare technology that helps caregivers to support pregnant women.
Dr. Eun-Shim Nahm implemented an adult-friendly eLearning program called the Theory-based Patient portal eLearning Program (T-PeP) to support older adults to access healthcare portals. In a randomized controlled trial, the study showed the program was effective in improving selected health and patient portal usage.
Dr. Kevin Ponto used laser technology to create digital models of the homes of patients diagnosed with diabetes so that their homes could be reviewed by clinicians using virtual reality (VR). The research used the VR simulations to recreate the issues patients encounter at home, and evaluated the connections between social structure, physical environment, and healthcare tasks. The findings showed that VR technology can be used to identify the many complex and concurrent interactions that impact PHIM.
Through focus groups and interviews, Dr. Anne Turner's research team at the University of Washington developed and evaluated guidelines for the design of PHIM systems for older adults. The guidelines appear in “The Essential Guide to Older Adult-Centered Design: Supporting Personal Health Information Management”, a resource for designers and developers creating health IT systems for adults and their caregivers.
Patient-Centered Shared Decision Making
Patient-Centered Shared Decision Making refers to the collaborative effort of a healthcare provider, a patient, and possibly a caregiver, to reach a healthcare decision that is best for the patient. The ideal patient-centered decision considers evidence-based information about available options, the provider's understanding, and the patient's preferences. The following research explores digital healthcare tools for patient-centered decision making:
In an effort to achieve high-quality inpatient-to-outpatient transitions, Dr. Anuj Dalal implemented a patient-centered discharge toolkit (PDTK). The kit’s components were used more frequently by patients than clinicians, with no significant change in the use of post-healthcare utilization following discharge. Overall, the research provides guidance for future efforts in discharge preparation.
Dr. Charles Safran created Information Sharing Across Generations and Environments (InfoSAGE), a website and mobile app for patients and caregivers to communicate and access resources on aging. The researchers found that when patients 75 years and older and their caregivers learned to use the app while healthy, it had a higher utilization rate than when first introduced during a medical crisis.
Dr. Corey Siegel developed a personalized, shared decision-making program, the Crohn’s Disease Prediction Tool, to help physicians communicate treatment options to patients. The tool summarizes the likelihood of Crohn's complications over 3 years, while the decision aid helps patients to understand the risks and benefits of available treatments. Evaluation of the tool showed improved shared decision making and the selection of more effective treatment options.
Dr. Lichuan Ye from Boston College designed an app, SLEEPkit, for sleep promotion for hospitalized patients. Researchers found it was difficult to obtain high usage rates of the tool, particularly when patients were very sick. The team concluded that adding a clinician interface to the app might enhance patient engagement.
Mobile Health Applications
Mobile Health Applications support consumers in managing their own health by providing guidance for healthy living and serving as a resource for health information. In addition, mobile apps allow patients to collect and report symptoms and other patient-reported outcomes (PROs) to their healthcare providers. AHRQ funds research examining the benefit of mobile apps for patients’ health, including the following:
Dr. Bonnie Gance-Cleveland and a team of researchers at the University of Colorado developed, evaluated, and implemented a screening tool using a mobile health app to generate individualized, evidence-based recommendations for pregnancy risk and protective factors. Providers and staff found the tool helpful in customizing discussions with patients about risk and protective factors, although they reported some workflow issues with the tool, along with concerns related to workflow disruption.
Dr. David Liss developed an app that notifies primary care providers (PCPs) when one of their patients arrives in the hospital or emergency department (ED), providing an opportunity for follow-up and care coordination. Using feedback collected through focus groups with patients and providers, the design of the app is patient-centered, with an emphasis on ease of navigation. The study’s findings reveal that the app can improve coordination of followup care after an ED visit.
Without close followup and titration of pain medications, those with sickle cell anemia typically have a high rate of acute care visits resulting from pain events. Dr. Nirmish Shah and his team at Duke University evaluated the impact of the “SMART app” (Sickle cell Mobile Application to Record symptoms via Technology app) on urgent care visits. Researchers found that patients who used the application (app), which allows individuals to self-monitor their condition, had significantly fewer acute care visits and were more likely to follow up with their provider than those who did not.
Dr. Angela Smith developed and tested a mobile health tool that collects PROs to enhance the care of patients after abdominal cancer surgery, and to provide feedback to patients and clinicians. Results from surveys and semi-structured interviews demonstrated overwhelming support and satisfaction with the tool.
To examine the effects of educational vaccine information, Dr. Melissa Stockwell compared human papilloma virus (HPV) vaccine series completion rates in two groups: patients who received conventional text message vaccine reminders, and patients who received customized, educational texts based on the family’s stage of decision making related to vaccinations. The study found that patients receiving any text message reminder had significantly higher rates of HPV series completion than those who received no texts. This highlights the value of text messaging vaccine reminders as a mechanism to increase vaccination rates.