International variation in the evaluation of consumer health information. A phenomenological study.

Introduction

Cancer related information grows at an exponential rate. However, it varies in validity and quality. Thus, the assessment and selection of appropriate resources can be difficult and overwhelming for patients and their caregivers. Libraries in cancer centres offer access to crucial health resources to those who seek informational support. This includes segments of the population who may be underserved or encounter barriers when seeking information. Librarians have criteria for assessing the suitability of consumer health information; the quality of resource, language level, author credibility and currency. However, these criteria may vary across centres. The Princess Margaret Hospital (PMH) in Toronto, Canada and the Centro di Riferimento Oncologico (CRO) in Aviano, Italy both have formal protocols that librarians use to inform collection development. The purpose of this study was to: (1) examine the formal guidelines and collection development policies used for resource selection, and (2) describe the resource review and selection experience of librarians at both cancer centre libraries. Differences found across sites were also described.

Methods

This study was conducted using transcendental phenomenology where the focus was on the description of the librarians’ experiences rather than those of the researchers’ interpretations. Bracketing was also used to reserve the researcher’s experience and views from influencing those collected from the participants. Before the study began, the researchers wrote a report documenting their own experience and impressions of the resource review and selection process, and attempted to answer their own research question, as a way of applying bracketing.

Participant recruitment provided a total of four participants; two librarians from the Patient and Family Library at PMH and two from the Patient Library at CRO. A package of four resources was sent to each librarian consisting of two online treatment information resources and two paper-based supportive care resources. The package was available in English for librarians at PMH and in Italian for those at CRO. Participants were asked to independently evaluate each resource and document their assessment. Following the independent review, a 60-minute, semi-structured telephone interview was conducted and recorded with each participant, in their preferred language (i.e., English, Italian). This was followed by a 15 to 30 minute questionnaire about their library collection and approach to its development. Formal documentation of the library collection guidelines and/or development policies were also collected and analyzed. Methods and criteria used to vet and select resources were also compared to those outlined in the formal document. Interview recordings were transcribed in their respective languages. The Italian transcriptions underwent English translation by a certified medical interpreter for analysis. Data analysis and interpretation was conducted by two researchers. Method of analysis followed the general phenomenological analysis approach which consists of identifying significant statements that depict the phenomenon in the transcript (horizonalization), which will be grouped into themes (clusters of meaning). The clusters will guide the written descriptions of the reported resource vetting and selection experience (textural description) and the context that influenced how the librarians experienced the phenomenon (structural description). Textural and structural descriptions verified between the two researchers were used to formulate the compiled description. A summary of the researchers’ own experience during the investigation and the context that may have influenced their experience were also reported in the discussion section. Calculations showed inter-rater reliability was established which can assist in solidifying findings because saturation was not reached. In addition, all results were presented back to the participants for validation.

Results

Preliminary results indicate that both centres use similar formal criteria in evaluation. Two of which had the most consideration included credibility and timeliness of the resources. When vetting resources, librarians placed importance on the accuracy of resource content and a clearly stated source of information, such as the organization and/or the name of the author(s). They also express confidence in resources that were clearly dated which reflects how current the information is.

However, informal criteria varied significantly between centres. The variation was based on the types of images presented, the presentation of the concept of cancer and discussion of death and dying. These informal criteria were influential in the librarians’ determination of whether a resource was suitable for inclusion in the library collection.

Discussion

As explained by Jasper (1994), the generalizability in a phenomenological study is to generate theories and provide descriptive data so that they may be used to further prospective investigation of the phenomenon. Findings from this study present preliminary insight into (1) the review and selection of resources for health centre libraries, and (2) how vetting guidelines and collection development policies are implemented in that process. The results indicated credibility and timeliness as being key criteria and often the initial starting point for assessment.

The study also found that context was a major informal criteria that determined a resource’s inclusion in the library collection. Based on these results, cancer related health information (including use of language and images), vetted by librarians must be of high validity and quality while being supportive and assistive to the cancer patients and their families. A good way for empowering the patient education, is to share with cancer patients’ and their family attending the libraries, the key criteria for assessing health information. This is important for three reasons: a) to help patients in their own research of reliable information; b) to avoid the upset due to a bad managing of uncertainty; c) assist patient with navigating their way through the health care system to properly access to procedures and consultation.

Without careful consideration for the context patients are in, selection of resources may include materials that may cause unwanted effects such as discomfort, uneasiness and anxiety. It is suggested that selection of consumer health information for health centre libraries should include careful consideration and sensitivity to how content is presented and how it could be perceived by patients and family members.