Patients as Safeguards: Understanding the Information Needs of Hospitalized Patients

Patients and their caregivers experience significant challenges with accessing, managing, and communicating information about their care. Such issues can lead to medical errors and low patient satisfaction. Typically, patients have limited access to information on their health status and care plan, and often express a desire for greater understanding in regards to their health care plan. Digital healthcare tools can be used to support patients’ and caregivers’ access to and engagement with meaningful information, allowing them to more effectively communicate with their healthcare team. These tools may facilitate a shared awareness and understanding of health status and safety risks among patients, caregivers, and medical providers.

This research established a better understanding of the information needs of patients and their caregivers. This information will inform the development of design requirements for technical and non-technical tools that will allow hospitalized patients and caregivers to obtain and track the information needed to communicate their safety concerns to their providers.

The specific aims of the research were as follows:

• Identify information that would increase patients’ and their care partners’ situational awareness, as well as enable them to recognize potential safety concerns. 
• Identify opportunities to support inpatients and their care partners in capturing and managing health information, concerns, questions, and customized care needs. 
• Determine strategies to support active dialogue among patients, care partners, and providers around safety-related concerns and the overall hospital care experience. 

The research team used a mixed-methods approach through multiple studies involving hospitalized children and adults and their caregivers at two hospitals in Seattle, Washington. The research recruited 529 participants, including patients, care partners, and clinicians involved in focus groups, interviews, and a survey to determine how patients understand their care plan, obtain their personal health information while hospitalized, and the best form of communication with their medical care team. A participant design process was also included in the study to develop three technological prototypes that could be used to enhance a patient’s hospital stay. These prototypes featured potential system designs to display and navigate health information a patient would need during a hospital stay.

The study’s findings suggest that existing technology does not adequately support patients in a hospital stay. The greatest needs identified were more informational support around preparing for discharge transitions, scheduling and patient status updates, full healthcare comprehension with support for patient questions, and care partner and provider healthcare collaboration. The research team has also identified the need for networking among other patients or caregivers to provide shared information about concerns and experiences. Technology that addresses these identified needs will improve patients’ hospital experience in addition to reducing medical errors.