CODESIGNING AN INFORMATION WEBSITE FOR CKD PATIENTS : RENACLIC

Introduction:

 The treatment of chronic kidney disease (CKD) requires essential behavioral changes by patients to achieve their nephroprotection goals. The use of digital solutions makes it possible, under certain conditions, for patients and healthcare professionals (HCPs) to communicate and support each other more effectively while optimizing caregivers' time. The web is the first and foremost source of information for all everyday uses. Only digital solutions that meet users’ needs, and efficiency criteria are successful. Involving end-users in the design and evaluation of these solutions is essential, as they must meet the same criteria of quality and usability to meet the expectations of both patients and caregivers. Our project focused on the experience and strategy to analyzing needs before co-designing a digital information platform on CKDs centered on - ease of navigation -quality of resources and -relevance of information.

Methods:

In a 3-stage project, we involved all the players and end-users of the solution in the co-design of an information and e-therapeutic patient education platform on CKD. We focused on needs and expectations analysis, benchmarking of existing digital ressources, IT co-development and content creation sharing to customize an optimal information digital space for patients, peer supporters, and HCPs.

Results:

A benchmark of existing sites (target audience, content, functionalities, usability), with a differences and similarities analysis, showed that few French sites meet patients' expectations. 10 major websites offered by patient's association, private companies or public institutions were screened and evaluated (FranceRein, Physidia, Renif, Diaverum, Nephrocare, Fondation du rein Aura (Paris, and Lyon), Aurad, Mobidy, Sfndt). Negative points were mostly related to poor usability or lack of content about "living with CKD", most content covering dialysis techniques and choices. Basic daily life related informations were missing (sexuality, pregnancy, loans and professional or social concerns). 

Semi-structured interviews were conducted with different interview frameworks for patients (n=5 among which 3 expert and 2 non-expert patients) and HCPs (n=3) who identified the lack of reliable online resources answering their needs. Non specialist physicians expect to find helpful and reliable infirmation to help diagnose/treat CKD and mostly otherwise need information that they could use towards patients (on dialysis and transplantation themes) to decrease anxiety and stress about CKD outcomes. Would they have such a website available, they would definitely refer the patients to it. Patients were more interested by clear and practical information on CKD and dialysis/transplantation to better understand the disease but also in "how to" content designed to help their empowerment in daily life (cooking, exercising) or help in understanding their blood tests and drug prescriptions. 

2 focus groups using 4 seps as shown in figure 1  helped define the organization, presentation, navigation, and expected themes for the "ideal" site (stage 1). 7 patients and HCPs participated. 

The specifications enabled the site's IT co-development (stage 2). The content of the site was designed by caregivers and patients to offer information, online events (webinars) and an e-TPE platform (stage 3). 

The final deliverable was the specifications document for the technical development and coding of the site by the developers. The website was then created and is currently under finalization by implementation of all contents. 

Conclusions:

Our digital space will in a future step, once fully elaborated, be offered to all patients and families interested in CKD management as well as health care professionals. We intend to estimate level of satisfaction of users, but also implement on-line educational activities dedicated to patients. We will assess the interest and benefits of implementing e-education therapy programs (e-ETP) on the quality of care pathways and the satisfaction of HCPS. 

Co-designing information websites with patients battling chronic kidney disease may help empowering them to shape resources that are truly relevant, ensuring the content is not only accurate but also deeply resonant with their daily experiences. Time and preliminary work focused on needs analysis, along with the use of co-design methods, are essential to ensure the creation of tools that meet the needs of end users.

I have no potential conflict of interest to disclose.

I did not use generative AI and AI-assisted technologies in the writing process.