Application for the Thomson Reuters Doctoral Dissertation Proposal Scholarship

Proposal title: Making sense of changing and evolving health information: Exploring uncertainty in an ‘evidence-based’ world

by Shelagh K. Genuis [email protected] Interdisciplinary PhD Candidate Faculty of Nursing, and the School of Library and Information Studies University of Alberta

A doctoral dissertation proposal submitted to the American Society of Information Science and Technology’s Information Science Education Committee Shelagh K. Genuis 2

Submitted June 30, 2009 Shelagh K. Genuis 3

CONTENTS

Introduction 3

Literature review 4

Illustrative medical case 4

Women’s health information behavior 5

Knowledge translation 5

Theoretical considerations 6

Research methods 6

Theoretical framework 7

Research questions 7

Research design 8

Data analysis 10

Research quality 11

Significance of research 12

Dissertation advisor endorsing proposal 13

References 13

Shelagh K. Genuis, publication list 18 Shelagh K. Genuis 4

Making sense of changing and evolving health information:

Exploring uncertainty in an ‘evidence-based’ world

Introduction

Much has been written about evidence-based practice (EBP) within health fields, and the challenges encountered when striving to translate medical knowledge into practice; however, little attention is paid to (1) the provisional, emergent and incomplete nature of medical evidence

(Upshur 2001) and (2) knowledge translation (KT) as an on-going process of social construction

(Gherardi 2006). The dilemma presented by emergent or evolving health information is magnified for consumers making health decisions within the context of everyday life. Within this context individuals are frequently assimilating and responding to health information mediated by a wide range of formal and informal sources including health professionals, the media, internet sources, advertising, and personal contacts. While there are studies focusing on health information behavior

(IB) in situations of acute medical need (cf. Ariail, Watts, and Bowen 2006; Lieberman and

Goldstein 2005), studies do not investigate the day-to-day experiences of individuals as they interact with and integrate health information from a variety of sources and in situations of uncertain and evolving medical evidence. Using a semi-structured narrative approach and ‘in the moment’ elicitation, this study explores how people respond to, make sense of, and use (or do not use) health information within the context of a specific illustrative medical case where medical evidence is explicitly evolving. Since health professionals are most likely to involve patients in shared decision-making in situations where health evidence is uncertain (Salkovskis and Rees

2004), it is critical to gain insight into the IB of individuals as they navigate evolving health information, and to explore how consumers translate the health knowledge available to them into personal practice. Shelagh K. Genuis 5

This research proposal begins with a brief literature review which outlines the illustrative medical case framing this exploration, highlights women’s health IB, examines KT, and presents theoretical considerations. Research methods are then detailed. The proposal concludes with discussion of research quality and significance.

Literature review

Illustrative medical case

Once viewed as optimum therapy for the prevention of long-term disease in healthy menopausal and postmenopausal women, the routine use of hormone therapy (HT) was irrefutably altered when results from the largest randomized clinical trial of HT, the Women’s Health Initiative

(WHI) study, indicated that risks exceeded benefits for healthy postmenopausal women using combined estrogen plus progestin (Rossouw et al. 2002; Peterson et al. 2004). This information, which was communicated, discussed and debated in literally hundreds of articles and editorials published in the scientific and popular press (Naughton, Jones, and Shumaker 2005), engendered profound uncertainty as women sought to understand and make use of HT-related information (cf.

Barber et al. 2004; Rigby, Ma, and Stafford 2007; Sawka et al. 2004). Because of (1) the widespread coverage of the WHI in the medical and consumer press (Genuis 2006), (2) the dramatic impact of the WHI on HT use and on the medical management of women experiencing the menopause transition (cf. Blumel et al. 2004; Hersh, Stefanick, and Stafford 2004; Buist et al.

2004), and (3) ongoing uncertainty about how to translate these new findings into practice (cf.

Hersh, Stefanick, and Stafford 2004; Wathen 2004, 2006), this illustrative case provides a strong basis from which to explore the experiences of women as they respond to, make sense of and use

(or do not use) changing and evolving health information. Shelagh K. Genuis 6

Women’s health information behavior

Women are active information agents who gather, seek and store health information for both themselves and others (cf. Macias, Lewis, and Shankar 2004; Wathen and Harris 2006).

Increasingly engaged in health IB “either before, instead of, or unrelated to a visit to a doctor”

(Warner and Procaccino 2004, 714), women interact with a complex array of formal and informal sources (cf. Castelo-Branco et al. 2006; Hoffmann et al. 2005; MacLennan, Taylor, and Wilson

2004). They are thus faced with the challenge of integrating multiple perspectives when navigating health information. Because women are more involved in gathering health information and in health-related decision-making than are men (cf. Kahn 2001; Macias, Lewis, and Shankar 2004), the illustrative case chosen for this investigation provides a credible foundation for exploring IB in situations where health information is evolving.

Knowledge translation

Despite overwhelming support within health fields for EBP, the gap between evidence and practice remains one of the most consistent findings in health research (Grol and Grimshaw 2003).

Consequentially, knowledge translation, a process whereby research knowledge is integrated into local contexts and made useful to decision-makers (Choi 2005), has emerged as a critical focus for researchers, funders and administrators. While decision-makers are commonly viewed as health professionals, a growing emphasis on shared decision-making, particularly in areas of medical uncertainty (Salkovskis and Rees 2004; Walter et al. 2004), raises questions about KT within the context of consumers.

Although the gap between evidence and practice is more complex where evidence is evolving, scholars point out that even established medical ‘fact’ represents only “a transient moment in an indeterminate process of stabilization and destabilization” (Wood, Ferlie, and

Fitzgerald 1998, 1730). This understanding of health information as inherently provisional and Shelagh K. Genuis 7 emergent (Upsur 2001) draws attention to KT as a constructed process that is based on research and experiential knowledge, as well as on reflection, negotiation of meaning, situational factors and material artifacts (Gherardi 2006). This constructionist approach also highlights social factors: knowledge is translated into use through a process of interpretation, social influence, and debate

(Fitzgerald et al. 2005). From this perspective, the translation of knowledge coincides with notions found within the Library and Information Science (LIS) literature: it is an active process in which new understanding is constructed from encountered information, existing knowledge structures, personal experience and socio-cultural environments (Talja, Tuominen, and Savolainen 2005).

Theoretical considerations

KT theories articulate a range of factors which, in addition to research evidence, critically influence people as they strive to make use of health information (Grol, Wensing, and Hulscher

2005). The Promoting Action on Research Implementation in Health Services (PARIHS) framework, which suggests that successful implementation of change is “a function of the relation between the nature of the evidence, the context in which the proposed change is to be implemented, and the mechanism by which the change is facilitated” (Kitson, Harvey, and McCormack 1998,

150), elucidates core elements which coincide with concepts found within IB research and which highlight KT as a contextually situated and socially constructed process. The view that evidence, context and facilitation each make critical contribution to KT provides a holistic theoretical schema for investigating how women make sense of evolving health information (Genuis 2008) and a useful framework for shaping semi-structured interviews and data analysis (Alkema and Frey 2006).

Research methods

The objective of this study is to better understand, from the patient’s perspective, how evolving health information is experienced and to explore how that experience influences health IB and the translation of knowledge into practice within women’s lives. Shelagh K. Genuis 8

Theoretical framework

The PARIHS framework will be used as a schema for exploring the interplay between evidence, context and facilitation as women translate the health information available to them into practice within their own lives. In addition, social positioning theory (Davies and Harre 1990; Van

Largenhove and Harré 1994) will facilitate exploration of the dynamic aspects of information encounters, particularly interpersonal interactions experienced by women while seeking to navigate evolving health information. This research study is, furthermore, based on a social constructionist approach that aims at identifying “general sense-making practices on the basis of which people orientate themselves in their everyday and working lives” (Talja, Keso, and Pietilainen 1999, 761), and notions of meaning-making that incorporate an active, process-oriented view of IB (Dervin

1992).

Research questions

Qualitative research methods will be used to explore the guiding question: What sense- making and information behaviors are elicited by uncertain and/or evolving health information?

This overarching question will be explored through the following specific research questions:

1. What are the experiences of women (including emotional, cognitive, and action-related

elements) as they respond to, make sense of, and use uncertain and/or evolving information

about health management during the menopause transition?

2. How does the construction of this uncertain and/or evolving health information encountered

via diverse mediums and within various contexts influence health IB (including decision-

making), KT, and encounters with health professionals?

3. How do women position themselves (e.g. as consumer, as co-decision maker, or as patient)

when encountering/seeking/exchanging health information, and how does that positioning

influence health IB? Shelagh K. Genuis 9

4. In what ways do information sources (including health professionals, informal interpersonal

interactions, and the media) facilitate women’s varying responses to uncertain/evolving

health knowledge? And what are the tensions experienced by women as they make sense of

information that is facilitated in different ways by formal and informal information sources?

Research design

Qualitative interviewing complements a social constructionist approach to research and provides rich data which facilitate exploration of the research questions posed in this study. As noted by Warren (2002), the “epistemology of the qualitative interview tends to be more constructionist than positivist” since participants are viewed “not as passive conduits for retrieving information” (83) but as actively involved in constructing meaning from various perspectives.

Furthermore, the “topic of qualitative interviews is the everyday lived world of the interviewee”

(Kvale 1996, 30). Thus, qualitative interviewing, which accepts “people’s knowledge, views, understandings, interpretations, experiences, and interactions” as meaningful properties of the reality being researched (Mason 2002, 63), is an apposite research method for exploring women’s experiences with personal health management in situations where health information is evolving.

In this study samples from two populations will be interviewed: (1) women who have been or are currently engaged in health IB or decision-making related to menopause or HT; and (2) health professional providing care or information to women who are navigating menopause.

Detailed field notes relating to contact with participants and interviews will be kept. Recruitment will occur in the community (e.g. physician’s offices, health food stores) as well as at the ‘Women’s

Wellness Program,’ a program functioning within the public health care system and providing support to a cross-section of women in the menopause transition. Theoretical sampling, which is guided by the literature and research questions, as well as purposive sampling to achieve maximum variation, will be used to select participants. In addition, snowball sampling may be used and the Shelagh K. Genuis 10 sample will be, in part, a sample of convenience with participation limited by geographical proximity.

Twenty to 25 women will participate in a single, audio-recorded interview (45 to 60 minutes). Two contrasting strategies will be used during the interviews with women participants.

(1) A semi-structured and narrative approach will be taken for the primary portion of the

interview in order to allow participants “scope to articulate their experiences in their own

terms” (Petersen 2006, 34). This approach will facilitate participants’ constructive processes

as they relate, interpret and draw together their health related experiences (Becker 1997;

Petersen 2006). The PARIHS framework will provide a schema which will theoretically

guide semi-structured interviews. This will facilitate insight into information sources

(evidence), the inter- and intra-personal circumstances of the individual woman (context)

and the impact of different means of information delivery and exchange (facilitation).

Reflection on the interaction between different information sources and women’s approach

to finding or receiving information will provide insight into how women position themselves

in relation to health professionals and information sources.

(2) While a Cochrane systematic review found that “mass media are the leading source of

information about important health issues” and that media influences health behaviors and

practices (Grilli, Ramsay, and Minozzi 2002, 2), this same review notes that the specific

impact of media is difficult to determine. ‘In the moment’ elicitation technique (Johnson and

Weller 2002) will therefore be used to elicit response to and reflection about health

information encountered on a day-to-day basis in the media. Guided by readership statistics

provided in Media Digest (Canadian Media Directors' Council 2007-2008), articles from the

media have been selected which present conflicting health information related to a topic

relevant to women participants. These articles will be presented and discussed sequentially Shelagh K. Genuis 11

in order to elicit reaction to and reflection on health information in the media, and response

to the presentation of conflicting health information.

A smaller sample of health professionals (a purposive sample of approximately ten individuals representing a range of health professions including traditional and natural medicine, nursing, pharmacy, and nutrition) will participate in a semi-structured interview lasting approximately 30 minutes. The purpose of these interviews is to gain health professionals’ perspectives on women’s health IB and on interactions between women and health professionals. In addition, these interviews will provide insight into the roles professionals play in facilitating the translation of knowledge into practice. Creswell (1998) notes that when using theoretical sampling, data from initial interviews with a primary homogeneous sample (women who are navigating changing information related to HT and/or menopause) can be illuminated by subsequent interviews with a heterogeneous sample (health professionals). This second set of semi-structured qualitative interviews will, therefore, also focus on data arising from the first series of interviews with women.

Data analysis

Qualitative data analysis will involve “taking things apart and identifying their constituent parts,” locating patterns, and reassembling data “in ways that begin to resemble a coherent explanation or description” (LeCompte 2000, 150). Analysis will be guided by phases that progress from data collection to explanation, and that involve data organization, immersion in the data and identifying items of interest, generating categories or sets of interest, data coding and interpretation, and meaningful representation of data and interpretation (cf. Creswell 1998; Marshall and Rossman

2006; Seidman 1998). In keeping with the nature of the guiding questions, descriptive, interpretive and discursive approaches, which will involve several interpretations of the text, will be incorporated in data analysis. Liamputtong and Ezzy (2005) identify theory building as “an ongoing Shelagh K. Genuis 12 dialogue between pre-existing theory and new insights” (266); therefore, understanding of themes and patterns will develop as this dialogue takes place during the analysis process.

Transcribed interviews and field notes will be analyzed using NVivo software, a qualitative data analysis program which also allows data to be ‘sliced’ according to identified characteristics

(demographic or qualitative). This tool enhances credibility because of its powerful assistance with data organization, coding, memoing, data analysis, and data presentation. Credibility is also enhanced by the extensive and accessible audit trail NVivo produces (Seale 2002).

Research quality

In their historic work Lincoln and Guba (1985) identify credibility, transferability, dependability, and confirmability as the four critical criteria for judging the soundness of interpretive qualitative research. For this investigation, credibility will be established through in- depth description of the complexities of processes. The following measures will be taken to strengthen credibility: (1) triangulation of interview approaches and data sources; (2) data interpretation from descriptive, interpretive and discursive perspectives; (3) identification and exploration of negative instances; (4) discussion and debriefing with peers; and (5) careful documentation at all research stages. Although in qualitative research the burden of proof for the application of findings from one context to another rests with subsequent researchers (Marshall and

Rossman 2006), transferability will be facilitated by providing thick description of the topic, research methods, research context, data, and interpretations. Logical and conceptual links between data, interpretation and theoretical frameworks will be clearly communicated. Dependability and confirmability will be established through detailed and descriptive research notes recording the following: any modifying changes occurring during the research process and the influence of these changes, coding decisions, emerging themes and interpretations, and conceptual linkage to theory. Shelagh K. Genuis 13

The integration of qualitative data within research results will improve confirmability by allowing interpretations and conclusions to be traced to source material.

Significance of research

With increasing interest in the IB of “ordinary people in everyday life situations and health contexts” (Fisher and Julien 2009, 317) and significant focus on KT within health fields, this study will contribute both theoretically and practically to knowledge in LIS and health care fields.

Understanding the health IB of women as they deal with uncertain and/or evolving health information will provide valuable insights regarding patient experience and the context in which medical change occurs, ingredients that Rycroft-Malone et al. (2002) identify as critical for change within medical systems. This research will also contribute to knowledge of how context influences health IB and what forms of facilitation are favored or perceived as useful when making sense of uncertain/evolving evidence related to HT and menopause. Scholars of KT note the “need for those involved in affecting clinical behavior change to move beyond unilinear models of information gathering and dissemination, and towards research strategies that address the local ideas, practices, and attitudes” (Wood, Ferlie, and Fitzgerald 1998, 1737). Study of the evolving nature of health information therefore challenges health librarians and information professionals to move beyond a focus on research evidence (Shipman 2004), and consider: (1) the role of context in information use; and (2) the variety of facilitating roles that information professionals might adopt as they contribute to KT within health settings (Harvey et al. 2002; MacIntosh-Murray and Choo 2005).

This research also makes significant contribution to the study of women’s health, and to the study of media impact in situations where health information is evolving and thus application to personal health management is uncertain. Shelagh K. Genuis 14

Dissertation advisor endorsing proposal

Dr. Heidi Julien School of Library and Information Studies, University of Alberta, Canada (see attached cover letter)

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Shelagh K. Genuis PUBLICATION LIST

School of Library and Information Studies University of Alberta Edmonton, Alberta, Canada email: [email protected] ______

PRESENTATIONS

Julien, Heidi and Shelagh K. Genuis. 2009. Experiences of the teaching role: A national survey of librarians. Paper presented at the Canadian Association of Information Science Annual Conference. May 29-30, Ottawa, Ont. (Refereed)

McKechnie, Lynne (E.F.), Heidi Julien, Shelagh K. Genuis, and Tami Oliphant. Sharing the results of research with Library and Information Science practitioners: A study of the practices of human information behaviour researchers. Paper presented at Information Seeking in Context (ISIC). Sept 17-20, Vilnius, Lithuania. (Refereed)

Genuis, Shelagh K. 2008. Evolving information in an ‘evidence-based’ world: Theoretical considerations. Paper presented at the Canadian Association of Information Science Annual Conference. June 5-7, Vancouver, B.C. (Refereed; awarded best scholarly paper authored by a student)

Julien, Heidi and Shelagh K. Genuis. 2008. Affective experiences of librarians’ instructional work. Paper presented at the Canadian Association of Information Science Annual Conference. June 5-7, Vancouver, B.C. (Refereed)

Genuis, Shelagh K. 2006. Exploring the role of medical and consumer articles in evolving health practices. Paper presented at the Canadian Health Libraries Association Annual Conference. May 12-16, Vancouver, British Columbia. (Refereed)

Genuis, Shelagh K. 2005. Exploring the role of medical and consumer articles in the diffusion of information related to medical change. Paper presented at the Canadian Association of Information Science Annual Conference. June 2-4, London, Ontario. (Refereed)

Genuis, Shelagh K. 2004. Information ‘context’ in medical and consumer articles related to menopausal hormone therapy. Paper presented the University of Alberta Open House Forum. October 2, Edmonton, Alberta. (Refereed) Shelagh K. Genuis 20

POSTER PRESENTATIONS

Genuis, Shelagh K. 2009. Making sense of changing and evolving health information: A qualitative exploration of women’s experiences. Presented at Thinking Qualitatively 2009. June 15-17, Edmonton, Alberta. (Refereed)

Genuis, Shelagh K. 2008. Making sense of changing and evolving health information: Exploring uncertainty in an ‘evidence-based’ world. Presented at Information Seeking in Context (ISIC). Sept 17-20, Vilnius, Lithuania. (Refereed)

PUBLICATIONS

Julien, Heidi and Shelagh K. Genuis. 2009. Affective experiences of librarians’ instructional work. Journal of Documentation. (Refereed, accepted).

McKechnie, Lynne (E.F.), Heidi Julien, Shelagh K. Genuis, and Tami Oliphant. 2008. Communicating research findings to library and information science practitioners: A study of ISIC papers from 1996 to 2000. Information Research: An International Journal 13(4). http://InformationR.net/ir/13-4/paper375.html (Refereed)

Genuis, Shelagh K. 2008. Making sense of changing and evolving health information: Exploring uncertainty in an 'evidence-based' world. Information Research: An International Journal 13(4). http://InformationR.net/ir/13-4/wks03.html (Refereed)

Genuis, Shelagh K. 2008. Evolving information in an ‘evidence-based’ world: Theoretical considerations. Canadian Journal of Information and Library Science 3/4(31): 209-231. (Refereed)

Genuis, Shelagh K. 2007. Kuhlthau’s classic research on the information search process (ISP) provides evidence for information seeking is a constructive process. Evidence Based Library and Information Practice 2 (4): 80-83. http://ejournals.library.ualberta.ca/index.php/EBLIP/article/view/609/645 (Refereed)

Genuis, S.K., and S.J. Genuis. 2006. Exploring the continuum: Medical information to effective clinical practice: Paper 1. The translation of knowledge into clinical practice. Journal of Evaluation in Clinical Practice 12 (1): 49-62. (Refereed)

Genuis, S.J., and S.K. Genuis. 2006. Exploring the continuum: Medical information to effective clinical practice: Paper II. Towards etiology-centered clinical practice. Journal of Evaluation in Clinical Practice 12 (1): 63-75. (Refereed)

Genuis, Shelagh K. 2006. Exploring the role of medical and consumer literature in the diffusion of information related to hormone therapy for menopausal women. Journal of the American Society for Information Science and Technology 57 (7): 974-988. (Refereed)

Genuis, S.J., and S.K. Genuis. 2005. Internet interactions: Adolescent health and cyberspace. Shelagh K. Genuis 21

Canadian Family Physician 51: 329-31, 334-6. (Refereed)

Genuis, S.J., and S.K. Genuis. 2005. Implications of cyberspace communication: A role for physicians. Southern Medical Journal 98 (4): 451-55. (Refereed)

Genuis, Shelagh K. 2005. Published literature and diffusion of medical innovation: Exploring innovation generation. Canadian Journal of Information and Library Science 29 (1): 27-54. (Refereed)

Genuis, Shelagh K. 2005. Exploring the role of medical and consumer articles in the diffusion of information related to medical change. In CAIS/ACSI 2005 Data, Information and Knowledge in the Networked World, online conference proceedings. http://www.cais-acsi.ca/2005proceedings.htm (Refereed)

Genuis, Shelagh K. 2004. Exploring information ‘context’ in the published literature of menopausal hormone therapy. Libri 54: 67-81. (Refereed)

Genuis, Shelagh K. 2004. Website usability: A critical tool for libraries. Feliciter 50: 161-4. (Refereed)

Genuis, S.J., and S.K. Genuis. 2004. Resisting cookbook medicine. British Medical Journal 329 (7458): 179. (Refereed)

Genuis, S.J., and S.K. Genuis. 2004. Human exposure assessment and relief from neuropsychiatric symptoms: Case study of a hairdresser. Journal of the American Board of Family Practice 17 (2): 136-41. (Refereed)

Genuis, S.J., and S.K. Genuis. 2004. Adolescent behaviour should be priority. British Medical Journal 328: 894. (Refereed)

Genuis, S.J., and S.K. Genuis. 2004. Managing the sexually transmitted disease pandemic: A time for re-evaluation. American Journal of Obstetrics and Gynecology 191 (4):1103-12. (Refereed)

Genuis, Shelagh K. 2003. Entrepreneurs within organizations. Wired West: Web Journal of the SLA Western Canada Chapter 6 (3). http://www.sla.org/chapter/cwcn/wwest/v6n3/genuis.shtml (First place, student paper competition)

Genuis, Shelagh K. 2001. Professional development in special libraries. At a Glance: Newsletter for the Canadian Association of Special Libraries and Information Services, Edmonton Chapter 23 (4). http://ecn.ab.ca/caslised/ataglance/23_4_paperwinner.html (First place, student paper competition)

Genuis, S.J., S.K. Genuis, and W.C. Chang. 2000. Well-being of women in the post-menopausal years. Journal of the Society of Obstetrics and Gynaecologists of Canada 22: 141-50. (Refereed) Shelagh K. Genuis 22

Genuis, S.J., W.C. Chang, and S.K. Genuis. 1996. Antenatal fetal heart rate and maternal intuition as predictors of fetal sex. Journal of Reproductive Medicine 41 (6): 447-9.

Genuis, S.J., and S.K. Genuis. 1995. Adolescent sexual involvement: Time for primary prevention. The Lancet 345 (8944): 240-1. (Refereed)

Genuis, S.J., and S.K. Genuis. 1995. Reproductive services: The need for ongoing evaluation. Journal of the Society of Obstetrics and Gynaecologists of Canada 17: 481-6. (Invited editorial)

Genuis, S.J., and S.K. Genuis. 1995. Medical technology and the re-emergence of eugenics. Journal of the Society of Obstetrics and Gynaecologists of Canada 17:411-4. (Invited editorial)

Genuis, S.J., and S.K. Genuis. 1995. Living and dying with dignity. Journal of the Society of Obstetrics and Gynaecologists of Canada 16: 1771-4. (Invited editorial, 50th anniversary issue)

Genuis, S.J., S.K. Genuis, and W.C. Chang. 1994. Public attitudes towards the right to die. Canadian Medical Association Journal 150 (5): 701-8. (Refereed)

Genuis, S.J., W.C. Chang, and S.K. Genuis. 1993. Public attitudes in Edmonton toward assisted reproductive technologies. Canadian Medical Association Journal 149 (2): 153-61. (Refereed)