Participatory design of a health informatics system for rural health practitioners and disadvantaged women

While advances in highly targeted therapies and increased use of mammogram services have contributed to the overall decline of breast cancer deaths in the United States, these benefits have not been distributed equitably. Less educated, poor, rural, non-Hispanic African American women have poorer access to cancer services and are less likely to have had a mammogram than are urban women. Lack of physician recommendations and perceived barriers in accessing diagnostic services are major factors that hinder the uptake of regular mammograms in rural communities. This article reports results of formative research conducted as part of a larger study focused on the participatory development of an electronic reminder system for breast cancer screening. The article discusses insights gained from focus groups with rural patients and clinicians about their information needs, breast cancer screening behaviors, barriers to care, and mammography referral practices. © 2010 Wiley Periodicals, Inc.

[1]  B. Kramer,et al.  Clinical cancer advances 2006: major research advances in cancer treatment, prevention, and screening--a report from the American Society of Clinical Oncology. , 2006, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[2]  Margaret Maglione,et al.  Interventions That Increase Use of Adult Immunization and Cancer Screening Services , 2002, Annals of Internal Medicine.

[3]  Juliann Cortese,et al.  Computer-tailored health interventions delivered over the Web: review and analysis of key components. , 2009, Patient education and counseling.

[4]  Douglas Schuler,et al.  Participatory Design: Principles and Practices , 1993 .

[5]  Bo Xie,et al.  Public library computer training for older adults to access high-quality Internet health information. , 2009, Library & information science research.

[6]  Stephanie L. Dickinson,et al.  Randomized trial of an intervention to improve mammography utilization among a triracial rural population of women. , 2006, Journal of the National Cancer Institute.

[7]  Terry L Conway,et al.  Predictors of mammography screening among ethnically diverse low-income women. , 2008, Journal of women's health.

[8]  N. Gordon Socioeconomic factors and breast cancer in black and white Americans , 2003, Cancer and Metastasis Reviews.

[9]  Anselm L. Strauss,et al.  Basics of qualitative research : techniques and procedures for developing grounded theory , 1998 .

[10]  V. Shavers,et al.  Racial/ethnic variation in clinical presentation, treatment, and survival among breast cancer patients under age 35 , 2003, Cancer.

[11]  L. Caplan,et al.  Racial/Ethnic Differences in the Self-Reported Use of Screening Mammography , 2003, Journal of Community Health.

[12]  E. Brink,et al.  Constructing grounded theory : A practical guide through qualitative analysis , 2006 .

[13]  A. Diamant,et al.  Racial/ethnic disparities in the use of preventive services among the elderly. , 2005, American journal of preventive medicine.

[14]  Leanne Bowler,et al.  Design-based research for LIS , 2008 .

[15]  R. A. Fowles Symmetry in Design Participation in the Built Environment: Experiences and Insights from Education and Practice , 2000 .

[16]  H. Mcdonald,et al.  Effects of computerized clinical decision support systems on practitioner performance and patient outcomes: a systematic review. , 2005, JAMA.

[17]  Cheryl R. Clark,et al.  Addressing social determinants of health to improve access to early breast cancer detection: results of the Boston REACH 2010 Breast and Cervical Cancer Coalition Women's Health Demonstration Project. , 2009, Journal of women's health.

[18]  E. Guadagnoli,et al.  Reducing racial/ethnic disparities in female breast cancer: screening rates and stage at diagnosis. , 2006, American journal of public health.

[19]  Richard L Street,et al.  Mediated consumer-provider communication in cancer care: the empowering potential of new technologies. , 2003, Patient education and counseling.

[20]  R. Levine,et al.  Rural-Urban Differences in Breast Cancer Screening among African American Women , 2005, Journal of health care for the poor and underserved.

[21]  Gary Marchionini,et al.  Human–information interaction research and development , 2008 .

[22]  Zhao Chen,et al.  Ethnicity and breast cancer: factors influencing differences in incidence and outcome. , 2005, Journal of the National Cancer Institute.

[23]  Julie Fisher,et al.  Consumer empowerment through metadata-based information quality reporting: The Breast Cancer Knowledge Online Portal , 2009, J. Assoc. Inf. Sci. Technol..

[24]  Jacob Buur,et al.  Games and Movies: Towards Innovative Co-design with Users , 2000 .

[25]  N. Breen,et al.  Toward a system of cancer screening in the United States: trends and opportunities. , 2005, Annual review of public health.

[26]  J. Heck,et al.  Delays in breast cancer diagnosis and treatment by racial/ethnic group. , 2006, Archives of internal medicine.

[27]  Office systems and their influence on mammography use in rural and urban primary care. , 2004, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[28]  David Robins,et al.  Consumer health information on the Web: The relationship of visual design and perceptions of credibility , 2010, J. Assoc. Inf. Sci. Technol..

[29]  Ahmedin Jemal,et al.  Trends in Breast Cancer by Race and Ethnicity , 2003, CA: a cancer journal for clinicians.

[30]  Elfreda A. Chatman,et al.  A Theory of Life in the Round , 1999, J. Am. Soc. Inf. Sci..

[31]  Michael J. Muller,et al.  Participatory design through games and other group exercises , 1994, CHI Conference Companion.

[32]  B. Rimer Interventions to enhance cancer screening , 1998 .

[33]  J. Lord,et al.  The Delta project: increasing breast cancer screening among rural minority and older women by targeting rural healthcare providers. , 2003, Oncology nursing forum.

[34]  K. Huelsman,et al.  Differences in physician referral practices and attitudes regarding hereditary breast cancer by clinical practice location , 2003, Genetics in Medicine.

[35]  R. Severson,et al.  Breast cancer screening barriers and mammography completion in older minority women , 2004, Breast Cancer Research and Treatment.

[36]  Toomas Timpka,et al.  Research Paper: Participatory Design of Information Systems in Health Care , 1998, J. Am. Medical Informatics Assoc..

[37]  Stephanie L. Dickinson,et al.  Racial differences in knowledge, attitudes, and cancer screening practices among a triracial rural population , 2004, Cancer.

[38]  Michael J. Muller,et al.  Participatory design: the third space in HCI , 2002 .

[39]  Michael D Fetters,et al.  Preference-based electronic decision aid to promote colorectal cancer screening: results of a randomized controlled trial. , 2007, Preventive medicine.

[40]  S. de Lusignan Web-based health applications provide useful and cost-effective tools; however, they should include key clinical variables and incorporate a coding or classification system. , 2005, Informatics in primary care.

[41]  Marcia J. Bates,et al.  Subject access in online catalogs: A design model , 1986, J. Am. Soc. Inf. Sci..

[42]  Michael J. Muller,et al.  Bifocal tools for scenarios and representations in participatory activities with users , 1995 .

[43]  F. X. Sligo,et al.  The knowledge - behavior gap in use of health information , 2000, J. Am. Soc. Inf. Sci..

[44]  J. Drew Procaccino,et al.  Toward wellness: Women seeking health information , 2004, J. Assoc. Inf. Sci. Technol..

[45]  Elfreda A. Chatman,et al.  The Impoverished Life-World of Outsiders , 1996, J. Am. Soc. Inf. Sci..

[46]  L. Sansom,et al.  Do Internet interventions for consumers cause more harm than good? A systematic review , 2002, Health expectations : an international journal of public participation in health care and health policy.

[47]  W. Chow,et al.  Rural–urban differences in stage at diagnosis. Possible relationship to cancer screening , 1991, Cancer.

[48]  Nahyun Kwon,et al.  Who goes to a library for cancer information in the e-health era? A secondary data analysis of the Health Information National Trends Survey (HINTS) , 2009, Library & Information Science Research.

[49]  Eric W. Ford,et al.  Predicting the adoption of electronic health records by physicians: when will health care be paperless? , 2006, Journal of the American Medical Informatics Association : JAMIA.

[50]  David H. Gustafson Investing in E-Health - What it Takes to Sustain Consumer Health Informatics , 2007 .

[51]  D. Stewart,et al.  Rural physicians' perspectives on cervical and breast cancer screening: a gender-based analysis. , 2001, Journal of women's health & gender-based medicine.

[52]  D. Haggstrom,et al.  Differences in the quality of breast cancer care among vulnerable populations , 2005, Cancer.

[53]  Louise S. Robbins,et al.  Understanding middle-aged women's health information seeking on the web: A theoretical approach , 2008, J. Assoc. Inf. Sci. Technol..

[54]  K. Evers,et al.  eHealth Promotion: The Use of the Internet for Health Promotion , 2006, American journal of health promotion : AJHP.

[55]  Rajeev Chaudhry,et al.  Web-based proactive system to improve breast cancer screening: a randomized controlled trial. , 2007, Archives of internal medicine.

[56]  Elizabeth Sadler,et al.  Inclusive interface design for seniors: Image-browsing for a health information context , 2007, J. Assoc. Inf. Sci. Technol..

[57]  Christopher B. Forrest,et al.  Adherence of low-income women to cancer screening recommendations , 2002, Journal of general internal medicine.

[58]  Mia Liza A. Lustria,et al.  Can interactivity make a difference? Effects of interactivity on the comprehension of and attitudes toward online health content , 2007, J. Assoc. Inf. Sci. Technol..

[59]  Ahmedin Jemal,et al.  Trends in Breast Cancer by Race and Ethnicity: Update 2006 , 2006, CA: a cancer journal for clinicians.

[60]  Henrik Eriksson,et al.  The impact of participation in information system design: a comparison of contextual placements , 2004, PDC 04.

[61]  Rebecca Smith-Bindman,et al.  Factors associated with mammography utilization: a systematic quantitative review of the literature. , 2008, Journal of women's health.

[62]  Donald O. Case,et al.  Collection of family health histories: The link between genealogy and public health , 2008, J. Assoc. Inf. Sci. Technol..

[63]  Davida Scharf,et al.  A Knowledge Management Model: Implications for Enhancing Quality in Health Care , 2006 .

[64]  K. Jamrozik,et al.  Rural-urban differences in the presentation, management and survival of breast cancer in Western Australia. , 2006, Breast.

[65]  J. Earp,et al.  Disparities in mammography screening in rural areas: analysis of county differences in North Carolina. , 2002, The Journal of rural health : official journal of the American Rural Health Association and the National Rural Health Care Association.

[66]  ETA S. BERNER,et al.  Review Paper: Will the Wave Finally Break? A Brief View of the Adoption of Electronic Medical Records in the United States , 2004, J. Am. Medical Informatics Assoc..

[67]  J Ryan,et al.  Mammographic screening for breast cancer. , 2003, New England Journal of Medicine.

[68]  P. Eggers,et al.  Associations of race, education, and patterns of preventive service use with stage of cancer at time of diagnosis. , 2004, Health services research.

[69]  Jeffrey P. Krischer,et al.  A Randomized Controlled Trial to Increase Cancer Screening Among Attendees of Community Health Centers , 2004, The Annals of Family Medicine.

[70]  David B Buller,et al.  Attributes of Interactive Online Health Information Systems , 2005, Journal of medical Internet research.

[71]  Mack T Ruffin,et al.  Information Technology and Cancer Prevention , 2006, CA: a cancer journal for clinicians.

[72]  Nancy Breen,et al.  What factors are associated with diagnostic follow-up after abnormal mammograms? Findings from a U.S. National Survey. , 2004, Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology.

[73]  D. Gustafson Outcomes Assessment in Cancer: Needs assessment in cancer , 2004 .

[74]  Pamela J. McKenzie Informing choice: The organization of institutional interaction in clinical midwifery care , 2009 .

[75]  David H. Gustafson,et al.  Assessing the needs of breast cancer patients and their families , 1993, Quality management in health care.

[76]  K. Ashing-Giwa,et al.  Understanding the breast cancer experience of women: A qualitative study of African American, Asian American, Latina and Caucasian cancer survivors , 2004, Psycho-oncology.

[77]  S. Mcphee,et al.  Office‐based interventions to improve delivery of cancer prevention services by primary care physicians , 1993, Cancer.

[78]  E. Flagg,et al.  Influence of usual source of care on differences by race/ethnicity in receipt of preventive services , 2002, Journal of General Internal Medicine.

[79]  R. D'Agostino,et al.  Psychosocial correlates of mammography screening in older African American women. , 2007, Oncology nursing forum.

[80]  V. Freedman,et al.  Sociodemographic differences in use of preventive services by women enrolled in Medicare+Choice plans. , 2004, Preventive medicine.

[81]  M. Clark,et al.  Health maintenance and screening in breast cancer survivors in the United States. , 2006, Cancer detection and prevention.

[82]  Greg Martin,et al.  Web-based interventions for substance use disorders: a qualitative review. , 2004, Journal of substance abuse treatment.

[83]  H Irene Hall,et al.  Breast and cervical carcinoma screening practices among women in rural and nonrural areas of the United States, 1998–1999 , 2002, Cancer.

[84]  T. James,et al.  Factors that affect breast cancer treatment: underserved and minority populations. , 2005, Surgical oncology clinics of North America.

[85]  Steven R. Simon,et al.  Correlates of Electronic Health Record Adoption in Office Practices: A Statewide Survey , 2006, AMIA.

[86]  Barbara L. Smith,et al.  Mammographic screening: Patterns of use and estimated impact on breast carcinoma survival , 2004, Cancer.

[87]  J. Mandelblatt,et al.  Patient and provider barriers to colorectal cancer screening in the primary care safety-net. , 2004, Preventive medicine.

[88]  O. Olopade,et al.  Racial and ethnic disparities in breast cancer: a multilevel perspective. , 2005, The Medical clinics of North America.

[89]  E. Ellerbeck,et al.  Impact of Geographic Barriers on the Utilization of Mammograms by Older Rural Women , 2002, Journal of the American Geriatrics Society.

[90]  Besiki Stvilia,et al.  A model for online consumer health information quality , 2009, J. Assoc. Inf. Sci. Technol..

[91]  F. Griffiths,et al.  Why Are Health Care Interventions Delivered Over the Internet? A Systematic Review of the Published Literature , 2006, Journal of medical Internet research.