Identifying gaps in consumer health library collections: a retrospective review
Keywords:neoplasm, consumer health, gap analysis, collection development
Background: The objective of this study was to determine if search request forms, which are used when a patron’s request for information cannot be fulfilled at the time of contact with the library team, can be used to identify gaps in consumer health library collections.
Case Presentation: Search request forms were collected from 2013 to 2020 and analyzed independently by two reviewers. Search request forms were included if they were complete and contained a record of how the request was fulfilled. Descriptive statistics were used to summarize patron characteristics. Search request forms were iteratively coded to identify themes in the data and determine if resources provided to patrons could be found within the library collection. The study team subsequently reviewed search request forms to determine reasons for identified gaps. Two hundred and forty-nine search request forms were analyzed. Six main content themes were identified: 1) understanding the cancer diagnosis, 2) cancer treatments, 3) understanding disease prognosis, 4) support during and after treatment, 5) natural health products and therapeutic effects in oncology, and 6) research literature. The majority of patrons were patients (53%). Over half (60%) of the submitted search request forms reflected collection gaps, and many (16%) contained queries for information about rare cancer diagnoses. The main reason that queries could not be satisfied was that there was limited consumer health information on the requested topics (53%).
Conclusions: Search request forms are a useful resource for assessing gaps in consumer health library collections.
Sze J, Marisette S, Williams D, Nyhof-Young J, Crooks D, Husain A, Bezjak A, Wong RK. Decision making in palliative radiation therapy: reframing hope in caregivers and patients with brain metastases. Support Care Cancer. 2006 Oct;14(10):1055–63. DOI: https://doi.org/10.1007/s00520-006-0032-y.
Hsien JWK, Rosewall T, Wong RKS. In their own words: a qualitative descriptive study of patient and caregiver perspectives on follow-up care after palliative radiotherapy. J Med Imaging Radiat Sci. 2013 Dec;44(4):209–13. DOI: https://doi.org/10.1016/j.jmir.2013.01.001.
Papadakos J, Trang A, Cyr AB, Abdelmutti N, Giuliani ME, Snow M, McCurdie T, Pulandiran M, Urowitz S, Wiljer D, Deconstructing cancer patient information seeking in a consumer health library toward developing a virtual information consult for cancer patients and their caregivers: a qualitative, instrumental case study. JMIR Cancer. 2017 May;3(1):e6. DOI: https://doi.org/10.2196/cancer.6933.
Hesse BW, Arora NK, Burke Beckjord E, Finney Rutten LJ. Information support for cancer survivors. Cancer. 2008 Jun:112(11 Suppl):2529–40. DOI: https://doi.org/10.1002/cncr.23445.
Roach AR, Lykins EL, Gochett CG, Brechting EH, Graue LO, Andrykowski MA. Differences in cancer information-seeking behavior, preferences, and awareness between cancer survivors and healthy controls: a national, population-based survey. J Cancer Educ. 2009;24(1):73–79. DOI: https://doi.org/10.1080/08858190802664784.
Mayer DK, Terrin NC, Kreps GL, Menon U, McCance K, Parsons SK, Mooney KH. Cancer survivors information seeking behaviors: a comparison of survivors who do and do not seek information about cancer. Patient Educ Couns. 2007 Mar:65(3):342–50. DOI: https://doi.org/10.1016/j.pec.2006.08.015.
Rutten LJ, Arora NK, Bakos AD, Aziz N, Rowland J. Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns. 2005 Jun;57(3):250–61. DOI: https://doi.org/10.1016/j.pec.2004.06.006.
Rothstein JA. Ethics and the role of the medical librarian: health care information and the new consumer. Bull Med Libr Assoc. 1993 Jul;81(3):253–8.
Egeland M. Hospital librarians: from consumer health to patient education and beyond. J Hosp Librariansh. 2015 Feb;15(1):65–76. DOI: https://doi.org/10.1080/15323269.2015.982944.
Weightman AL, Williamson J, Library and Knowledge Development Network Quality and Statistics Group. The value and impact of information provided through library services for patient care: a systematic review. Health Info Libr J. 2005 Mar;22(1):4–25. DOI: https://doi.org/10.1111/j.1471-1842.2005.00549.x.
Marshall JG, Sollenberger J, Easterby-Gannett S, Morgan LK, Klem ML, Cavanaugh SK, Oliver KB, Thompson CA, Romanosky N, Hunter S. The value of library and information services in patient care: results of a multisite study. J Med Libr Assoc. 2013 Jan;101(1):38–46. DOI: https://doi.org/10.3163/1536-5050.101.1.007.
Burton JE. The impact of medical libraries and literature on patient care in New Zealand. Bull Med Libr Assoc. 1995 Oct;83(4):425–30.
Stacey D, Paquet L, Samant R. Exploring cancer treatment decision-making by patients: a descriptive study. Curr Oncol. 2010 Aug;17(4):85–93. DOI: https://doi.org/10.3747/co.v17i4.527.
Sium A, Giuliani M, Papadakos J. The persistence of the pamphlet: on the continued relevance of the health information pamphlet in the digital age. J Cancer Educ. 2017 Sept;32(3):483–6. DOI: https://doi.org/10.1007/s13187-015-0948-3.
Cline RJ, Haynes, KM. Consumer health information seeking on the Internet: the state of the art. Health Educ Res. 2001 Dec;16(6):671–92. DOI: https://doi.org/10.1093/her/16.6.671.
Bayrer R, Beattie S, Lucas E, Melberg D, Melton E. What have we done for you lately? Measuring hospital libraries' contribution to care quality. J Hosp Librariansh. 2014 Jul;14(3):243–9. DOI: https://doi.org/10.1080/15323269.2014.888514.
Zipperer L. Clinicians, librarians and patient safety: opportunities for partnership. Quality and Safety in Health Care. 2004;13(3):218. DOI: https://doi.org/10.1136/qshc.2002.003103.
Princess Margaret Cancer Centre. General Cancer Websites [Internet]. 2017 [cited 2019 Mar]. Available from: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/General_Cancer_Websites.pdf.
Microsoft Corporation. Microsoft Excel. 2018.
Thomas DR. A general inductive approach for analyzing qualitative evaluation data. Am J Eval. 2006;27(2):237–46. DOI: https://doi.org/10.1177/1098214005283748.
Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: implications for conducting a qualitative descriptive study. Nurs Health Sci. 2013:15(3):398–405. DOI: https://doi.org/10.1111/nhs.12048.
Centers for Disease Control and Prevention. Health literacy: develop & test materials [Internet]. 2019. Available from: https://www.cdc.gov/healthliteracy/developmaterials/index.html.
American Society of Clinical Oncology. 2021. Available from: https://www.asco.org/.
Kue J, Klemanski DL, Browning KK. Evaluating readability scores of treatment summaries and cancer survivorship care plans. JCO Oncol Pract. 2021 Feb;OP.20.00789. DOI: https://doi.org/10.1200/op.20.00789.
Shim EJ, Park JE, Yi M, Jung D, Lee KM, Hahm BJ. Tailoring communications to the evolving needs of patients throughout the cancer care trajectory: a qualitative exploration with breast cancer patients. BMC Womens Health. 2016 Oct;16(1):65. DOI: https://doi.org/10.1186/s12905-016-0347-x.
Germeni E, Bianchi M, Valcarenghi D, Schulz PJ. Longitudinal qualitative exploration of cancer information-seeking experiences across the disease trajectory: the INFO-SEEK protocol. BMJ Open. 2015 Oct;5(10):e008933. DOI: https://doi.org/10.1136/bmjopen-2015-008933.
Johnson Q. Mind the gap: using patron actions to identify holes in a library's collection. In: 2016 Library Assessment Conference. Northwestern University; 2016.
Levenson HN. Notes on operations nimble: collection development policies. Libr Resour Tech Serv. 2019:63(4).
Leonard K, Earl M. Health information without limits: a print collection for consumers in the heart of the hospital. J Hosp Librariansh. 2016;16(2):132–44. DOI: https://doi.org/10.1080/15323269.2016.1150739.
Corrall S. Part 1: The concept of collection development in the digital world. Collection Development in the Digital Age. Cambridge University Press. 2011. DOI: https://doi.org/10.29085/9781856048972.003.
Samantaray Rath M, Rath P. Collection development in libraries: challenges and solutions for library professionals. Pearl: A Journal of Library and Information Science. 2014; 8:53. DOI: https://doi.org/10.5958/j.0975-6922.8.1.009.
Eheman CR, Berkowitz Z, Lee J, Mohile S, Purnell J, Rodriguez EM, Roscoe J, Johnson D, Kirshner J, Morrow G. Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. J Health Commun. 2009 Jul-Aug;14(5):487–502. DOI: https://doi.org/10.1080/10810730903032945.
Kimiafar K, Sarbaz M, Shahid Sales S, Esmaeili M, Javame Ghazvini Z. Breast cancer patients' information needs and information-seeking behavior in a developing country. The Breast. 2016;28:156–60. DOI: https://doi.org/10.1016/j.breast.2016.05.011.
McLellan F. "Like hunger, like thirst": patients, journals, and the internet. Lancet. 1998;352(Suppl 2):SII39–43.
Berger O, Gronberg BH, Loge JH, Kaasa S, Sand K. Cancer patients' knowledge about their disease and treatment before, during and after treatment: a prospective, longitudinal study. BMC Cancer. 2018 Apr;18(1):381. DOI: https://doi.org/10.1186/s12885-018-4164-5.
Vogel BA, Bengel J, Helmes AW. Information and decision making: patients’ needs and experiences in the course of breast cancer treatment. Patient Educ Couns. 2008;71(1):79–85. DOI: https://doi.org/10.1016/j.pec.2007.11.023.
Quality Health. National Cancer Patient Experience Survey 2014 National Report. 2014. England. Available from: https://www.lcnuk.org/system/files/English_cancer_experience_survey_2014.pdf.
Fulda PO, Kwasik H. Consumer health information provided by library and hospital Websites in the South Central Region. J Med Libr Assoc. 2004;92(3):372–5.
Natural Medicines. Natural medicines & Supplements Database [Internet]. 2021. Available from: https://trchealthcare.com/about-us/products/natural-medicines/.
Scarton LA, Del Fiol G, Oakley-Girvan I, Gibson B, Logan R, Workman TE. Understanding cancer survivors' information needs and information-seeking behaviors for complementary and alternative medicine from short- to long-term survival: a mixed-methods study. J Med Libr Assoc. 2018;106(1):87–97. DOI: https://doi.org/10.5195/jmla.2018.200.
Loggers ET, Prigerson HG. The end-of-life experience of patients with rare cancers and their caregivers. Rare Tumors. 2014 Jan;6(1):5281. DOI: https://doi.org/10.4081/rt.2014.5281.
Bell C, Kerr K, Moore K, McShane C, Anderson L, McKnight AJ, McAneney H. Communication strategies for rare cancers: a systematic review protocol. Syst Rev. 2019 Apr;8(1):102. DOI: https://doi.org/10.1186/s13643-019-1017-5.
Fitch MI. Needs of patients living with advanced disease. Can Oncol Nurs J. 2005 Autumn; 15(4):230–42. DOI: https://doi.org/10.5737/1181912x154230235.
Papadakos J, Giannopoulos E, Forbes L, Fox C, Jain P, McBain S, Mittman N, Moody L, Samoil D, McLeod R. Reinventing the wheel: the incidence and cost implication of duplication of effort in patient education materials development. Patient Educ Counsel. 2021;104(6):1398–1405. DOI: https://doi.org/10.1016/j.pec.2020.11.017.
Papadakos J, Samoil D, Giannopoulos E, Jain P, McBain S, Mittmann N, Papadakos T, Fox C, Moody L, McLeod R. The cost of patient education materials development: opportunities to identify value and priorities. J Cancer Educ. 2020. DOI: https://doi.org/10.1007/s13187-020-01893-0.
Ghazavi-Khorasgani Z, Ashrafi-Rizi H, Mokarian F, Afshar M. Health information seeking behavior of female breast cancer patients. J Educ Health Promot. 2018;7: 138. DOI: https://doi.org/10.4103/jehp.jehp_17_18.
Solowski NL,Okuyemi OT, Kallogjeri D, Nicklaus J, Piccirillo JF., Patient and physician views on providing cancer patient-specific survival information. Laryngoscope. 2014;124(2):429–35. DOI: https://doi.org/10.1002/lary.24007.
Charow R, Snow M, Fathima S, Giuliani ME, McEwan K, Winegust J, Papadakos J. Evaluation of the scope, quality, and health literacy demand of Internet-based anal cancer information. J Med Libr Assoc. 2019;107(4):527–37. DOI: https://doi.org/10.5195/jmla.2019.393.
Rooney MK, Sachdev S, Byun J, Jagsi R, Golden DW. Readability of patient education materials in radiation oncology-are we improving? Pract Radiat Oncol, 2019;9(6):435–40. DOI: https://doi.org/10.1016/j.prro.2019.06.005.
Papadakos JK, Giannopoulos E, McBain S, Forbes L, Jain P, Samoil D, Wang J, Zwicker V, Fox C, Moody L, McLeod R. Quality assessment of cancer patient education materials: the current state of systemic therapy patient education in fourteen cancer centres across Ontario, Canada. Support Care Cancer. 2020. DOI: https://doi.org/10.1007/s00520-020-05859-2.
Foltz AT, Sullivan JM. Limited literacy revisited implications for patient education. Cancer Pract. 1999;7(3):145–50. DOI: https://doi.org/10.1046/j.1523-5394.1999.07304.x.
Van Dijck S, Nelissen P, Verbelen H, Tjalma W, Gebruers N. The effects of physical self-management on quality of life in breast cancer patients: a systematic review. Breast. 2016;28:20–28. DOI: https://doi.org/10.1016/j.breast.2016.04.010.
Ghandourh WA. Palliative care in cancer: managing patients’ expectations. J Med Radiat Sci. 2016;63(4):242–57. DOI: https://doi.org/10.1002/jmrs.188.
Fry E. Fry's readability graph: clarifications, validity and extension to level 17. The Journal of Reading. 1977.
Mclaughlin G. SMOG grading - a new readability formula. The Journal of Reading. 1969.
Agency for Healthcare Research and Quality. PEMAT for Printable Materials (PEMAT-P). Rockville, MD; 2020. Available from: https://www.ahrq.gov/health-literacy/patient-education/pemat-p.html.