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Introduction Young adults with chronic autoimmune conditions face unique and often overlooked challenges in post‐secondary education due to the invisible and unpredictable nature of these conditions. This patient‐led qualitative study aims to further understand the experiences of young adults living with chronic autoimmune conditions while attending or considering attending post‐secondary education. Methods The study followed the three‐phase Patient and Community Engagement Research (PaCER) approach, a participatory framework that trains individuals with lived experience to lead all stages of research. In the first stage (SET), the protocol was co‐designed with three external patient‐partners. Study participants included young adults (18–35 years) with a chronic autoimmune condition for > 1 year who considered attending or attended a Canadian post‐secondary school within the last 5 years and were recruited through social media. Data were collected (COLLECT) via focus group and interviews and then analysed using thematic and narrative analysis. Findings were shared back with study participants (REFLECT) for refinement and to inform recommendations. Results Ten young adults participated, and eight key themes were identified. Themes included the wide‐ranging impacts of disease management, the value of peer and family support, protective and risk factors for success, limited awareness and education around chronic conditions, and sometimes‐unconscious burden of navigating invisible conditions. Participants also reflected on their resilience and the shifting accessibility landscape during Covid‐19, and offered detailed feedback on current gaps and needed support. Their recommendations underscored ongoing institutional shortcomings and the need for systemic change. Conclusion Our findings indicate that young adults living with chronic autoimmune conditions are not having their needs sufficiently met while navigating the post‐secondary education system. It is imperative that changes and feedback provided by students with lived experience are implemented to ensure an accessible post‐secondary education experience. Patient or Public Contribution Seven PaCER researchers, who identify as young adults with lived experience of chronic conditions, led the study design, data collection, analysis and manuscript preparation. This study was also co‐designed with three external patient‐partners who also identify as young adults with chronic conditions.

Background Co‐build is one of the four pillars of the Patient Engagement Framework from the Canadian Institutes of Health Research Strategy for Patient Oriented Research. Collaborating with Patient Research Partners (PRPs) using co‐build approaches can enhance the applicability of healthcare tools produced. Human Centred Design (HCD), a problem‐solving methodology focused on creating functional solutions for users, offers a promising approach to co‐building patient engagement tools. Objective To describe the process of using a HCD approach to co‐build patient engagement tools with PRPs and to identify successes and challenges encountered. Methods A HCD working group was formed from a Patient Advisory Council (PAC) that supports a research program to optimize laboratory test ordering in hospitalized patients. The HCD working group included nine PRPs, two patient engagement team members, and a HCD specialist. The working group employed the Double Diamond 4D design methodology: Discover, Define, Design, and Deliver, along with patient engagement principles of mutual respect, inclusiveness, support, and co‐build. At the conclusion of the HCD process, we conducted a semi‐structured debrief session to obtain perspectives on challenges and successes from all working group members. These were then summarized and collated iteratively with feedback from the group members. Results The working group met 31 times in 12 months and co‐developed three patient engagement tools (an infographic, a video, and a website) to educate and engage hospitalized patients about the bloodwork process. HCD working group members valued the diverse and inclusive environment within the group, the available enrichment opportunities in HCD and qualitative research, and presence of patient engagement team members. Challenges noted included delays in timelines due to difficulties with consensus‐building and redundancy in discussion topics. Conclusion HCD approaches can be effectively combined with the principles of patient engagement to facilitate co‐building with PRPs in healthcare. Future research is required to further the evidence for these strategies and their application in co‐building processes, including use of clear project mapping and timelines and transparent consensus‐building approaches. Patient or Public Contribution A PAC that consisted of nine PRPs guided this study. PRPs collaborated throughout the study. The current six PRPs were involved in the decision to write and are co‐authors on this manuscript. PAC members had participated equally in the conduct of a prior qualitative study to understand patient needs about bloodwork processes in hospitals. With the guidance of a HCD specialist, PRPs contributed to decisions on content, wording, and imagery for the tools. The PAC members are currently collaborating on a study to implement these tools in hospitals and to evaluate the utility from a patient perspective.

Five tips for crafting success in your social media advertising are presented. They are: 1. Set a budget. 2. Set a goal. 3. Find a target audience. 4. Test, measure and adjust. 5. Be creative.