Unlabelled: This paper will view the rise of the e-patient, who is "equipped, enabled, empowered, and engaged" through the lens of the evolution of successive digital technology innovations, each building on its predecessors, creating new tools for patient empowerment. We begin with the dawn of the web and the proliferation of health websites and discuss the use of digital communication tools. We then discuss the adoption of electronic health records, which enabled the rise of patient portals. This digitization of health data, along with the rapid adoption of mobile internet access and the proliferation of health-related smartphone apps, in turn, provided a platform for patients to coproduce health care by contributing their own health data to their self-care and health care. The exchange of health information between patients and providers has also been facilitated by telehealth or telemedicine technology, which enables direct care delivery. The use of social networks in health, in use since the early days of the web, has expanded since COVID-19, when public health authorities worldwide, as well as patients, sought the use of social media channels to get connected and share information. Most recently, artificial intelligence and large language models have emerged with yet untapped potential to provide patients with the information that could improve their understanding of their conditions and treatment options. We conclude that innovations in digital health technology have symbiotically evolved with the ascendance of the e-patient, enabling improved communication, collaboration, and coordination between patients and clinicians and forging a health care system that is safer and more responsive to patient needs.
Background: Chronic wounds affect 1%-2% of the global population, and pose significant health and quality-of-life challenges for patients and caregivers. Advances in artificial intelligence (AI) and computer vision (CV) technologies present new opportunities for enhancing wound care, particularly through remote monitoring and patient engagement. A digital wound care solution (DWCS) that facilitates wound tracking using AI was redesigned as a patient-facing mobile app to empower patients and caregivers to actively participate in wound monitoring and management.
Objective: This study aims to evaluate the feasibility, usability, and preliminary clinical outcomes of the Patient Connect app (Swift Medical Inc) in enabling patients and caregivers to remotely capture and share wound data with health care providers.
Methods: A feasibility study was conducted at 2 outpatient clinics in Canada between May 2020 and February 2021. A total of 28 patients with chronic wounds were recruited and trained to use the Patient Connect app for wound imaging and secure data sharing with their care teams. Wound images and data were analyzed using AI models integrated into the app. Clinicians reviewed the data to inform treatment decisions during follow-up visits or remotely. Key metrics included app usage frequency, patient engagement, and wound closure rates.
Results: Participants captured a median of 13 wound images per wound, with images submitted every 8 days on average. The study cohort included patients with diabetic ulcers, venous ulcers, pressure injuries, and postsurgical wounds. A median wound closure surface area closure of 80% (range 15-100) was achieved across all patients, demonstrating the app's clinical potential. Feedback from patients and clinicians highlighted during the feasibility testing support insight into the app's usability, data security features, and ability to enhance remote monitoring that need to be explored in further qualitative research.
Conclusions: The Patient Connect app effectively engaged patients and caregivers in chronic wound care, demonstrating feasibility and promising clinical outcomes. By enabling secure, remote wound monitoring through AI technology, the app has the potential to improve patient adherence, enhance care accessibility, and optimize clinical workflows. Future studies should focus on evaluating its scalability, cost-effectiveness, and broader applicability in diverse health care settings.
Unlabelled: Clinical trial registries were designed to help patients search for potentially suitable clinical trials. When our family faced another serious cancer diagnosis, we searched multiple international clinical trial registries. Despite increasing evidence that trials designed with patients can be better for trial participants (eg, they can have more relevant outcome measures and fewer burdens), it is currently impossible to search registries for these specific types of trials. In this Patient Perspective article, we make the first "call to action" for clinical trial registries to include (1) a filter that allows for efficient searching for clinical trials designed with patients and (2) structured information, in plain language, on how patients were involved. We propose how these two innovations could help reduce barriers to clinical trial participation. We also highlight how new regulatory and ethical guidelines are encouraging patient involvement in trial design, and we identify the benefits to many of doing so. Given the pressing need to improve clinical trial participation, we respectfully call on the clinical trial community to respond to our call to action and consider our proposed action plan. Ideally, when patients want to search for clinical trials designed with patients for patients, we should be able to find them. A plain language summary for this publication is available in the supplementary material for this paper.
Unlabelled: The proliferation of artificial intelligence (AI)-based mental health chatbots, such as those on platforms like OpenAI's GPT Store and Character. AI, raises issues of safety, effectiveness, and ethical use; they also raise an opportunity for patients and consumers to ensure AI tools clearly communicate how they meet their needs. While many of these tools claim to offer therapeutic advice, their unregulated status and lack of systematic evaluation create risks for users, particularly vulnerable individuals. This viewpoint article highlights the urgent need for a standardized framework to assess and demonstrate the safety, ethics, and evidence basis of AI chatbots used in mental health contexts. Drawing on clinical expertise, research, co-design experience, and the World Health Organization's guidance, the authors propose key evaluation criteria: adherence to ethical principles, evidence-based responses, conversational skills, safety protocols, and accessibility. Implementation challenges, including setting output criteria without one "right answer," evaluating multiturn conversations, and involving experts for oversight at scale, are explored. The authors advocate for greater consumer engagement in chatbot evaluation to ensure that these tools address users' needs effectively and responsibly, emphasizing the ethical obligation of developers to prioritize safety and a strong base in empirical evidence.
Background: The Pancreatic Cancer Action Network (PanCAN) established its Patient Registry to gather real-world data from patients with pancreatic cancer and their caregivers, related to their diagnosis, symptoms and symptom management, treatments, and more. Results from version 2 of the PanCAN Registry are presented here.
Objective: We sought to gather and evaluate patient-reported outcomes data inputted into the PanCAN Patient Registry from December 2020 to January 2024. Statistical analyses were used to identify findings from a relatively small sample size (271 participants, as defined by people who filled out the Basics survey of the PanCAN Registry).
Methods: Participation in the PanCAN Patient Registry was voluntary, and participants filled out an electronic consent form before joining the registry. Participants were identified through the PanCAN Patient Services Help Line or navigated to the registry directly via the PanCAN website. Data analysis took place via bivariate analysis using the chi-square test for categorical variables. Statistical significance was defined as a P value of <.05, with P values between .05 and .1 considered marginally significant, and P values >.1 considered insignificant.
Results: Pain was reported by 186 out of the 207 (89.9%) PanCAN Patient Registry participants who filled out the pain-related questions in the General Assessment survey. We observed a marginally significant (P=.06) difference between the reporting of pain by patients aged younger than 65 years (86/92, 93.5%) and those aged 65 years or older (66/78, 84.6%). Depression was also a common condition experienced by patients with pancreatic cancer, with 64/103 (62.1%) indicating that they were experiencing or had experienced depression during the course of their illness. A trend suggested that depression was more frequently reported among the subset of patients who also reported pain (53/80, 66.3%) compared with those who did not report pain (5/13, 38.5%; P=.07).
Conclusions: The use of patient-reported outcomes and real-world data for patients with pancreatic cancer has the potential to have direct impact on clinical practice. Through a relatively small sampling of patients, trends were identified that suggest a higher reporting of pain amongst patients in a younger age group as well as concurrence of pain and depression. These findings underscore the importance of a multidisciplinary team of health care professionals addressing patients' needs beyond the treatment of their cancer.
Unlabelled: Artificial intelligence (AI) and large language models offer significant potential to enhance many aspects of daily life. Patients and caregivers are increasingly using AI for their own knowledge and to address personal challenges. The growth of AI has been extraordinary; however, the field is only beginning to explore its intersection with participatory medicine. For many years, the Journal of Participatory Medicine has published insights on tech-enabled patient empowerment and strategies to enhance patient-clinician relationships. This theme issue, Patient and Consumer Use of AI for Health, will explore the use of AI for health from the perspective of patients and the public.
Background: Surgical ward rounds (SWRs) are typically led by doctors, with limited involvement from key participants, including patients, family members, and bedside nurses. Despite the potential benefits of a more collaborative and person-centered approach, efforts to engage these stakeholders remain rare.
Objective: This qualitative exploratory study aims to examine the experiences and needs of doctors, nurses, patients, and their relatives during SWRs as part of a participatory design process.
Methods: Data were collected through ethnographic field studies, focus groups with the health care providers, patients, and relatives, and dyadic interviews conducted as part of home visits to patients and their partners after discharge. Field notes and interview data were analyzed using systematic text condensation.
Results: Lack of organization, traditional roles, and cultural norms compromised the quality, efficiency, and user experience of SWRs in multiple ways. SWRs were routine-driven, treatment-focused, and received lower priority than surgical tasks. Unpredictability resulted in unprepared participants and limited access for nurses, patients, and relatives to partake.
Conclusions: The study identified a gap between the organizational and cultural frameworks governing the SWRs and the experiences and needs of key participants. Digital technologies were perceived as a potential solution to address some of these challenges.
Background: Surgical ward rounds (SWRs) are often unstructured and deprioritized compared to traditional surgical tasks, leading to limited interdisciplinary collaboration, unprepared patients, and low family attendance.
Objective: This study aimed to co-design and develop a digital framework to facilitate a shared agenda for SWRs, ensuring all core participants can attend and participate effectively.
Methods: Participatory Design (PD) methodologies were employed, utilizing user-engaging activities within an iterative process. A multidisciplinary team, including patients, relatives, healthcare providers, technology designers, and researchers, collaborated in workshops and testing to translate user needs into prototypes of technologies consisting of the digital framework.
Results: A logistics system was developed for nurses to pre-book the SWRs in designated time slots, enabling them to prepare relevant data and partake in the dialogue with patients. Additionally, a mobile health application (mHealth app) displayed the schedule for patients and relatives, helping them to participate and prepare questions in advance. Multiple iterations ensured that the digital framework met user needs and was feasible for clinical practice.
Conclusions: Our findings underscore the importance of collaboration between users and technology designers in developing digital health technologies. Engaging the users helped identify technical and organizational constraints that needed to be addressed to integrate the digital framework into clinical settings.
Background: Smartphone apps can improve access to bipolar disorder (BD) care by delivering elements of effective psychological interventions, thereby promoting quality of life and reducing relapse risk and mood instability in BD. While many people with BD are interested in using publicly available mental health smartphone apps, without guidance, they risk selecting apps that are unsafe or ineffective.
Objective: This study aimed to co-design a brief educational video on identifying appropriate mental health apps and to evaluate the acceptability and impact of this video among individuals with BD.
Methods: Individuals with lived experience of BD, including 2 peer researchers and members of 2 advisory groups (n=4 and n=7), were consulted to develop a video with information on selecting safe, effective, and engaging mental health apps for BD. Video acceptability and impact on self-reported digital health literacy (including both general eHealth literacy and more specific mobile health literacy) were evaluated via a web-based survey, including both a validated measure and complementary items developed by the research team.
Results: In total, 42 individuals with BD completed the evaluation survey (n=29, 69% women, mean age 38.6, SD 12.0 years). Digital health literacy, measured using the self-report eHealth Literacy Scale, significantly improved after viewing the video (pre: mean 32.40, SD 4.87 and post: mean 33.57, SD 4.67; t41=-3.236; P=.002; d=-0.50). Feedback supported the acceptability of the video content and format. Self-report items developed by the study team to assess mobile health literacy showed that individuals felt better able to determine which apps would protect their data (P=.004) and to ask their health care provider for support in choosing apps (P<.001) after watching the video.
Conclusions: This study found preliminary evidence that an educational video can help people with BD improve their ability to identify, apply, and evaluate the quality of digital health resources. The video and a supplementary web-based educational module are freely available for implementation in health care settings and have the potential to be a cost-effective and accessible resource for clinicians to support patients with BD to navigate the public app marketplace in support of their self-management goals.
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