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Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered.
The purpose of this research study was to deconstruct patrons’ information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons’ information needs (collection development).
We employed a qualitative, instrumental case study to deconstruct patrons’ health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim.
A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants’ conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%).
The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian’s ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress.
It is well established that patients want and need information pertaining to their cancer [
While health care providers are patients’ preferred source for health information [
The Princess Margaret Cancer Centre is the largest cancer centre in Canada and is located in downtown Toronto, Ontario. The Patient & Family Library (PFL) at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information. As part of their role, the librarian conducts
The PFL assists patrons, often patients or their caregivers, in finding health information they may need throughout the cancer care trajectory. The PFL houses a variety of health-information materials in a variety of formats—pamphlets, lendable books, DVDs, and CDs—that patrons can browse on their own or with the assistance of a trained library staff member. Brief interactions between staff and patrons—a patron asks a simple question resulting in a straightforward response—happen quite frequently and are manually tracked in the PFL shift log. When a patron’s information needs require a more in-depth discussion, the librarian may conduct an information consult with patrons to help them understand and refine their information needs, find resources to meet their needs, and explore other topics that the patron may not have considered. These information consults usually consist of a 10-15-minute conversation between the patron and the librarian and are tracked in the PFL shift log. Complex information requests that are not readily addressed by the PFL’s resource collection can be submitted to the librarian using a Search Request Form (SRF). To respond to an SRF query, the librarian searches for current and credible resources online and, when needed, scientific literature to address the patron’s request, and creates a tailored information package including a cover letter. Patrons can pick up the package or receive it by mail or through email. These services are only available to patrons who visit the PFL.
A qualitative, instrumental case study was employed to deconstruct and examine how patrons seek and find health information in the PFL. Qualitative case study methodologies employ a variety of qualitative methods to answer “how” and “why” questions about complex phenomena within the context they occur [
The study sample was comprised of target end users of VIC. A convenience sample of patients (from initial diagnosis to long-term follow-up), caregivers, and PFL staff from the Princess Margaret Cancer Centre were recruited to participate in the different phases of this research study, described below. Potential participants were excluded if they were under the age of 18, were not fluent in English, or unable to provide informed consent.
Ethnographic observation was conducted to gain a better understanding of how library patrons get from point of entry to finding/receiving resources that address their information needs. The ethnographic observation was conducted in collaboration with the University Health Network’s Healthcare Human Factors (HHF) group, a diverse team of human factors specialists who are trained in human factor principles, design, and evaluation, including usability evaluations and ethnographic studies on clinical users and their environments. Two members of the HHF group independently observed the interactions between library staff and patrons visiting the PFL over the course of 3 days. During each interaction, the observers recorded details of the visitor’s movements throughout the PFL, including any conversation the visiting patron may have had with PFL staff. The observers did not directly interact with visiting patrons. Following each interaction, the observers conducted a short debrief with the librarian to ensure that the nature of the interaction was accurately recorded. The observers conducted thematic analyses of the recorded interactions and personas emerged. The observers discussed the themes at length and once satisfied that they had captured the various approaches to information seeking and had categorized them appropriately, presented their findings to the study team to discuss and refine the personas. The study team supported the findings and only two changes were made. The first change was to collapse two personas into one, as there was much overlap between the two; the second change was to refine the names assigned to the personas in an effort to make them more descriptive.
Semistructured interviews were conducted in person with the PFL library staff to complement the findings from the ethnographic observation. Informants were recruited through an email describing the study and inviting them to participate in the interview. During the 60-minute interview, informants were asked open-ended questions intended to capture the kinds of discussions that occurred between the library staff and patrons, with a particular focus on how the library staff assisted patrons in identifying and/or expressing their information needs, and what resources were provided. Interviews were audio recorded and transcribed, and a thematic analysis was performed on the transcripts.
A card-sorting exercise was performed. Card sorting is a technique that is often used in Web development to better understand users’ mental models by examining how individuals view items as relating to each other and how they group items into categories [
The titles and descriptions of 50 resources from the PFL catalog were randomly selected to be used during the card-sorting exercise. Each card included the full title of the resource and a brief description—one or two sentences—to describe the type of information contained in each resource. The format (ie, book, video, website, etc) was not included on the card. The subject headers under which each resource was cataloged in the PFL were used as the categories into which participants could choose to sort the cards.
Participants for the card-sorting exercise were recruited by staff in the PFL and passively through recruitment posters distributed throughout the hospital. An invitation to participate in this research study was also sent to an electronic distribution list of patients and caregivers who had previously consented to be sent invitations to participate in research.
OptimalSort software (Optimal Workshop) was used to administer the card-sorting exercise, facilitate data collection, and record responses. The OptimalSort interface displayed the names of the 50 resources on cards to participants. As with typical closed card-sorting exercises, the participants were instructed to sort the 50 cards into the categories provided using drag and drop. Some examples of titles of resources selected for card sorting included
The same 50 cards were also sorted by the librarian into the PFL categories to provide a basis to compare patient conceptual groupings to those used in the PFL. A similarity matrix was created with the aggregate participant card-sorting results; it was then reordered using the librarian’s groupings to allow for easier comparison. If participants’ conceptual categories were a match with the librarian’s, we expected to see clusters of agreement along the diagonal axis, corresponding within each category.
Document analysis, including a retrospective review of 1 month of the most recent PFL shift logs and 5 months of the most recently submitted SRFs, was conducted to provide insight into the information resources given to patrons and the types of topics requested. An additional review of these information resources was conducted to determine how many were available online. A descriptive analysis was performed on the quantitative data and a thematic and keyword analysis was performed on the qualitative data.
A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. A total of seven library patron personas were identified by the HHF researchers based on the ethnographic observation data. Personas emerged based on a combination of familiarity with the PFL, motivation for visit (where available), and specific information-seeking behavior. The personas were further supported when cross-referenced with the data extracted from the key informant interviews and shared with the study team. Patrons transition between different personas depending on their experience and information needs at different times. The personas identified included the following: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. Once the personas were established, the study team discussed Web apps that could be used to serve the needs of each type of persona. Descriptions of personas, information-seeking considerations for each persona, and the corresponding Web app recommendations are shown in
Description of personas, information-seeking considerations, and Web app recommendations.
| Persona | Description | Information-seeking considerations | Corresponding Web app recommendation |
| Newbie | New visitor to the PFLa, looking for general information, possibly feeling overwhelmed, and not yet aware of the ample services and information available to them | Exploratory search strategy | Results filtering |
| Seasoned | Familiar with the library and what it offers; require little assistance from the library staff and often come in looking for a specific resource | Focused search strategy | Search bar (with fuzzy search) |
| Window Shopper | Explore pamphlet racks and the front display table; unlikely to interact with the library staff and some may not enter the PFL | Exploratory search strategy | Card display with featured items enabling quick information scanning |
| Direct | Knows exactly what they are looking for, often coming in with a specific resource title request or a recommendation from a clinician; less likely to explore the library | Focused search strategy | Search bar (with fuzzy search) |
| Collector | Some familiarity with the PFL and comes in to find information on a specific topic; collect as much as they can on that topic and do not seek anything further | Exploratory search strategy | Topic-based menu options |
| Information Seeker | Engages in an information consult with the librarian and seeks as much information as possible; typically leaves the PFL with a comprehensive set of resources | Focused search strategy | Topic-based menu options |
| Distressed | Visibly upset and preoccupied; may seek either general or specific information, but not so much information that it overwhelms them; may also need someone to talk to such as the library staff, spiritual care, or psychosocial support | Varied | Clear social support section (including audio-based mindfulness exercises and clear list of support services) |
aPFL: Patient & Family Library.
A total of 83 participants completed the closed card-sorting exercise. To aid with identifying categories, card pairings that were paired by 27 or more participants were color coded. These highlighted cells were then compared to the librarian’s categories to determine if cards were sorted similarly between the participants and the librarian.
The participants’ conceptual categories within the similarity matrix overlapped with the conceptual categories created by the librarian, with only a few differences. Participant categorization of 10 of the 50 cards did not agree with the categorization used by the librarian, as seen in
Card titles
1. How to Use Your Feeding Tube
2. Relaxation Therapy
3. Caregiver Stress
4. Anti-Cancer
5. Living with Advanced Cancer
6. Spiritual Care
7. Coping With Cancer—Psychosocial Oncology
8. The Healing Journey
9. Where's Mom's Hair?
10. When a Parent Has Cancer
A total of 161 entries in the PFL shift log and 65 SRFs were analyzed to determine what resources were given to PFL patrons. The PFL shift logs recorded simple queries on topics ranging from health information and support to directions in and around the hospital. The most common types of resources distributed to address these queries were pamphlets (distributed in 93% of the queries), books (distributed in 16% of these queries), and e-books (distributed in 2% of these queries).
The queries recorded in the SRFs were for cancer information (33%), specific treatment information (32%), clinical trials and/or research articles (20%), and rare cancer information (15%). The most common types of resources provided to address SRFs were credible cancer websites (62%), followed by research articles and clinical trial webpages (48%), which require special access to use. Fewer queries required books, pamphlets and brochures (38%), classes, events and support groups (23%), or contact information of a health professional (9%). Most search request resources were available online (61%); however, 47% of these resources were not available to the general public.
After deconstructing how patrons seek information in the PFL, examining the mental models they use to categorize health information, and reviewing the types of resources provided by PFL staff, we determined it was feasible to develop an online complementary tool that can assist cancer patients and caregivers in finding high-quality cancer health information. However, it is not possible to replicate all of the PFL functions in entirety.
Seven patron personas were observed in the PFL that underline the different ways that patients and caregivers approach information seeking, complementing previous research that found that users seek health information by using a focused or an exploratory approach [
The needs of six personas—Newbie, Direct, Seasoned, Collector, Window Shopper, and Information Seeker—may be met by including certain features in the VIC interface design. Conducting a search is the most common starting point for consumers seeking health information [
Addressing the needs of the Distressed persona is more challenging as technology cannot replace human interaction and immediate connection to psychosocial support that is possible in the PFL. No studies have examined the effectiveness of online self-help interventions for cancer-related distress; however, there is significant evidence to suggest mindfulness-based stress reduction programs are effective interventions for managing cancer-related distress [
When examining how patrons organize health information, it was determined that the mental model they used was similar to that used by librarians in the PFL, and thus categorizing information using the subject headings used in the PFL would not hinder users’ ability to find information. The conceptual clusters created by the participants were not a precise match for those used in the PFL; however, the differences may be attributed to the data collection method. The protocol limited the categorization of each resource to precisely one category, requiring participants to use their judgment to determine best fit. In practice, the PFL catalog associates multiple subject headings to each resource. Differences in conceptual clusters may also be attributed to differing familiarity of the resources included in the card-sort activity. The librarian had in-depth knowledge of each resource in the activity while participants’ knowledge was limited to the title and brief description provided on the card.
In examining the resources provided to patrons by PFL staff, most were related to cancer topics including information on rare types, specific treatments, and clinical trials, with more than half of these resources available online. Previously, the research team determined that the collection development policy for the PFL should focus on relevance to patron population, credibility, currency, and accessibility of the content and its format [
Since the completion of the study, an interface prototype of VIC has been built, tested with users, and refined through several iterations. Next steps involve collaborating with Web developers to build the VIC database and user interface. Future studies will involve evaluating the VIC interface.
The purpose of this study was to deconstruct the health information-seeking behavior of patrons of the PFL to determine the feasibility of building a Web app that could assist patients and caregivers with finding high-quality cancer health information. Through observing daily operations in the PFL, seven patron personas were identified that describe how patients and caregivers approach information seeking. The subject headings used by the librarian were compared to groupings used by patrons and we found that they were a close match. The majority of resources given to patrons were available online.
The study findings suggest it is possible to replicate the services of the PFL in a Web app, with a few exceptions. The elements that cannot be replicated online include access to journal articles or other content behind paywalls and the librarian’s ability to encourage further discussion through empathy and active listening. Further discussion with the librarian could serve to refine and predict needs through observing information seekers and provide immediate connection to spiritual care and psychosocial support for patrons in distress.
Healthcare Human Factors
Patient & Family Library
Search Request Form
virtual information consult
We are grateful for the support of the Princess Margaret Cancer Foundation Stella Ruth Feitelson Fund and to Craig Olmstead and Stephanie Kischak for their assistance.
None declared.