Kira Dinim, Student Librarian, Centre for Clinical Epidemiology and Evaluation at Vancouver Coastal Health, kira.dinim@ubc.ca
Background
The role of the health sciences librarian is shifting, as it always is; we are a field in flux as we move and grow with the digital information world around us, a world that is shifting faster than ever in the age of GenAI. As a student taking the first steps in this field, I want to take this space to explore my first autonomous experience of consumer health information resource creation in a non-traditional setting.
Upon completing the first year of my Masters degree, I was hired as the student librarian for the Centre for Clinical Epidemiology and Evaluation (fondly, C2E2) on a short-term work placement. The qualitative research team had completed a study to understand the core outcomes that were important to liver transplant patients, their caregivers, and their allied health professionals (AHPs). Over the course of the study, the researchers identified several gaps in the information that patients and their caregivers felt they had access to during their transplant; these findings were accessory to the original goal of the study, but the teams decided that they should not be ignored. I was hired to understand and rectify these gaps.
There are no other librarians or information professionals at C2E2; my direct supervisors were clinicians and qualitative scientists who expected me to step in and be the subject matter expert from day one. This was, in some ways, terrifying, and in other ways, incredibly freeing. It allowed me complete agency to decide how to proceed, something that is rarely afforded to students. Below is a description of my process, for anyone in roles which include creating consumer health resources and are curious to see a student’s autonomous design approach based on theoretical information science principles.
The project
Step One: Establish an Understanding of Patient Needs.
I spent the first several weeks of the project reading anonymized patient and caregiver interview transcripts to understand how and where patients and caregivers identified information gaps. I then examined all of the available patient information resources that were already provided by the transplant team and the regional transplant authority. Once I was sufficiently familiar with what information was available and what needs patients expressed, I began interviewing AHPs connected to the liver transplant team. I spoke to nurse coordinators, social workers, and patient research partners with the goal of building a resource that was genuinely grounded in the needs of service users.
Step Two: Conduct Environmental Scan to Identify and Compare Gaps.
With a clear idea of the findings of the research study and the needs of the individuals involved in the liver transplant process, I turned to the information resources created by other liver transplant programs across the country. Vancouver General Hospital hosts British Columbia’s only liver transplant program, but there are other programs in several provinces across Canada. I looked through the available resources from each of these programs, reading their patient guides, web pages, and pamphlets to get an idea of how other programs are ensuring that their patients have all of the necessary information while undergoing liver transplant. I noted down what information was covered by these programs but not by Vancouver’s, and which gaps matched those identified by patients, caregivers, and AHPs.
Step Three: Synthesize Research and Begin Resource Design.
Steps one and two provided me with sufficient information to build a framework for what was missing and begin to plan for rectifying these gaps. I established core domains of information that needed to be covered and identified considerations for resource design. Liver transplant patients are often older adults, and information overload is common during times of intense stress such as that of experiencing a critical illness. Therefore, two of the core guiding principles for designing an information resource were accessibility and design principles to reduce information overload. I decided to structure resources into three distinct groups; pre-transplant, post-transplant, and other information throughout the transplant process.
Step Four: Create Resource in Consultation with External Stakeholders
Several years prior to this project, the liver transplant team had begun the process of creating a “Patient Guide to Liver Transplant”, an electronic patient guide on the Vancouver Coastal Health (VCH) website. It had never been published, and I was able to gain access to it to finish development and add in the core identified domains, including improved psychological wellness resources, information on where to stay and how to get to Vancouver, sources of provincial and federal financial support, and more. I worked with the VCH communications team to draft website content, and they created the necessary website architecture with my guidance for accessible, older adult-friendly design, taken from Regina M. Gilbert’s book Inclusive Design for a Digital World.
Step Five: Review and Fine Tune Final Resources.
As of writing, this project is just entering the review stage; as a completed website, it will be sent to patient and caregiver research partners for review and feedback, and I hope to go through several rounds of editing and fine-tuning to ensure that it genuinely meets the needs of those it has been designed for. I am so excited to be able to share the final version with the liver transplant and research teams in a few months.
Final reflections
This project brings together some of the best aspects of this field: knowledge mobilization, outreach, resourcing, information architecture, and most importantly, service. I am so grateful that I was given the opportunity to bridge the gap between research and practice in order to meet the expressed needs of patients. Throughout the process I have been met with excitement and eagerness; there was immense relief from the transplant team that they would not have to continue to do important work outside the scope of their roles. While a librarian is perhaps not the first person that comes to mind to execute this kind of project, it is a perfect use of our diverse skillset. I would love to hear from you if you have worked on a similar project or would like to share additional considerations and best practices for creating patient information resources.
Health Libraries Group 