T1resources.uk; rated, reviewed, reliable. A co-created website for people affected by type 1 diabetes.

Abstract

People with type 1 diabetes (T1DM) spend many hours each year on self-care activities. They are often isolated and find it difficult to access trustworthy information online. T1resources.uk fills this gap: it is the first of its kind to provide a curated library of resources created for and by people with T1DM. The website is co-curated, with equal healthcare professional and peer representation and input. It signposts its users to pre-existing digital material, having first ensured their safety and usability using a robust review process. The website is low-cost, maximising on social capital. It houses a comprehensive range of resources that vary from peer blog posts to pdf files of sick-day rules. Each resource is catalogued under easy-to-navigate categories to make self-care as straightforward as possible. Since its launch in September 2016, over 7,500 users have accessed the website and feedback has been very positive both from healthcare professionals and people with T1DM.

Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review

“…Of the 96 publications included in the scoping review,11 13 publications (14%) contained no information that was relevant to the objectives of this study and were therefore excluded. Thus, our analysis included 83 publications, reporting on 21 patient-driven innovations 18–100. The publications that were excluded concerned the two innovations ( DIY-APS 101–107 and PatientsLikeMe 108–113) that accounted for most of the publications included (n=49, 59%).…”

“…One way to enhance patient agency in self-care was through the curation of trustworthy information and knowledge. Innovations included shared libraries of quality-assured diagnosis-specific self-care information ( T1resources.uk ), as well as personal health records (eg, MediStori), and online health information platforms (eg, PatientsLikeMe ) that provided functionalities for collecting, presenting, and comparing personal health data over time, and with others 64 72 83 99. These platforms contributed to patient agency in self-care by providing patients with tools to initiate self-monitoring and engaging in self-experimentation, possibly inspired by experiences of other platform users.…”

“…uk), as well as personal health records (eg, MediStori), and online health information platforms (eg, PatientsLikeMe) that provided functionalities for collecting, presenting, and comparing personal health data over time, and with others. 64 72 83 99 These platforms contributed to patient agency in self-care by providing patients with tools to initiate self-monitoring and engaging in self-experimentation, possibly inspired by experiences of other platform users. In addition to tracking personal health data, the Hallucination tracking innovation used sensors to collect data from the environment (eg, air temperature, humidity, air pressure); this enabled hypothesis testing to explore correlations between the occurrence of auditory hallucinations and air quality.…”

Patient-driven innovations reported in peer-reviewed journals: a scoping review

“…The 20 identified innovations addressed the unmet needs of patients and family caregivers with diabetes (7 innovations, 46 publications18–63); cancer (1 innovation, 1 publication64); rare diseases (3 innovations, 5 publications65–69); gastrointestinal diseases (2 innovations, 4 publications70–73); disabilities (2 innovations, 3 publications74–76); Parkinson’s disease (2 innovations, 3 publications77–79) and mental illness (1 innovation, 2 publications80 81). There were also innovations targeting unmet needs of multiple conditions (2 innovations, 32 publications82–113).…”

Usability and Preliminary Efficacy of an Artificial Intelligence–Driven Platform Supporting Dietary Management in Diabetes: Mixed Methods Study

“…Although studies have suggested that education is an important aspect to improve existing mHealth apps in diabetes management, this has only been adopted by a few apps [ 15 , 47 ]. As the educational component was provided primarily in the nutritional values displayed in user-posted recipes, it is recommended to modify the web-based platform, which could be cocreated by people with diabetes and health care professionals, thereby using existing learning resources on diabetes management and minimizing costs [ 53 ].…”