Public Health Genomics
How Online Family History Tool Design and Message Content Impact User Perceptions: An Examination of Family HealthLinkThomas S.N.a · Hovick S.R.a · Tan N.a · Sturm A.C.b · Sweet K.c
aSchool of Communication, The Ohio State University, Columbus, OH, USA
bGenomic Medicine Institute, Geisinger Health System, Danville, PA, USA
cDivision of Human Genetics, Department of Internal Medicine, The Ohio State University, Columbus, OH, USA
Log in to MyKarger to check if you already have access to this content.
Access via DeepDyve
- Unlimited fulltext viewing Of this article
- Organize, annotate And mark up articles
- Printing And downloading restrictions apply
Article / Publication Details
Background: Family health history tools have the ability to improve health outcomes and promote patient-provider communication, but some research suggests their effectiveness is limited. Tool design features may heavily influence users’ perceptions of the tools. Aims: This study provides a summative evaluation of the Family HealthLink tool, which assesses cancer and coronary heart disease risk based on personal and family health history, to better understand how tool design and message content impact user perceptions. Method: User observations and semi-structured interviews were conducted with breast cancer patients (n = 16) and support persons (n = 18) at an academic comprehensive breast center. Results: The users responded positively to many of Family HealthLink’s features, but they noted that it lacked a modern design. The participants felt much of the risk information was too generic and did not account for lifestyle factors. The users also did not consistently interpret the qualitative risk assessments provided by Family HealthLink. Conclusion: Our data analysis suggests that certain aspects of the Family HealthLink tool could be executed more effectively to take fuller advantage of opportunities for online personalization.
© 2018 S. Karger AG, Basel
- Feero WG, Facio FM, Glogowski EA, Hampel HL, Stopfer JE, Eidem H, et al. Preliminary validation of a consumer-oriented colorectal cancer risk assessment tool compatible with the US Surgeon General’s My Family Health Portrait. Genet Med. 2015 Sep;17(9):753–6.
- Sweet K, Sturm AC, Rettig A, McElroy J, Agnese D. Clinically relevant lessons from Family HealthLink: a cancer and coronary heart disease familial risk assessment tool. Genet Med. 2015 Jun;17(6):493–500.
- Christianson CA, Powell KP, Hahn SE, Blanton SH, Bogacik J, Henrich VC; Genomedical Connection. The use of a family history risk assessment tool within a community health care system: views of primary care providers. J Genet Couns. 2012 Oct;21(5):652–61.
- Ruffin MT 4th, Nease DE Jr, Sen A, Pace WD, Wang C, Acheson LS, et al.; Family History Impact Trial (FHITr) Group. Effect of preventive messages tailored to family history on health behaviors: the Family Healthware Impact Trial. Ann Fam Med. 2011 Jan-Feb;9(1):3–11.
- Cohn WF, Ropka ME, Pelletier SL, Barrett JR, Kinzie MB, Harrison MB, et al. Health Heritage©, a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity. Public Health Genomics. 2010;13(7-8):477–91.
- Rubinstein WS, Acheson LS, O’Neill SM, Ruffin MT 4th, Wang C, Beaumont JL, et al.; Family Healthware Impact Trial (FHITr) Group. Clinical utility of family history for cancer screening and referral in primary care: a report from the Family Healthware Impact Trial. Genet Med. 2011 Nov;13(11):956–65.
- Buchanan AH, Christianson CA, Himmel T, Powell KP, Agbaje A, Ginsburg GS, et al. Use of a patient-entered family health history tool with decision support in primary care: impact of identification of increased risk patients on genetic counseling attendance. J Genet Couns. 2015 Feb;24(1):179–88.
- de Hoog CL, Portegijs PJ, Stoffers HE. Family history tools for primary care are not ready yet to be implemented. A systematic review. Eur J Gen Pract. 2014 Jun;20(2):125–33.
- Hovick SR, Bevers TB, Vidrine JI, Kim S, Dailey PM, Jones LA, et al. User perceptions and reactions to an online cancer risk assessment tool: a process evaluation of Cancer Risk Check. J Cancer Educ. 2017 Mar;32(1):141–7.
- McGuire WJ. McGuire’s classic input-output framework for constructing persuasive messages. In: Atkin CK, Rice RE, editors. Public communication campaigns. Thousand Oaks (CA): Sage; 2013. p. 133–46.
- Wilson BJ, Carroll JC, Allanson J, Little J, Etchegary H, Avard D, et al. Family history tools in primary care: does one size fit all? Public Health Genomics. 2012;15(3-4):181–8.
- Welch BM, Wiley K, Pflieger L, Achiangia R, Baker K, Hughes-Halbert C, et al. Review and comparison of electronic patient-facing family health history tools. J Genet Couns. 2018 Apr;27(2):381–91.
- Welch BM, Dere W, Schiffman JD. Family health history: the case for better tools. JAMA. 2015 May;313(17):1711–2.
- Kelly KM, Sweet K. In search of a familial cancer risk assessment tool. Clin Genet. 2007 Jan;71(1):76–83.
- De Vito KM, Baer HJ, Dart H, Chiuve SE, Rimm EB, Colditz GA. Validation of a risk prediction tool for coronary heart disease in middle-aged women. BMC Womens Health. 2015 Nov;15:101.
- Hampel H, Sweet K, Westman JA, Offit K, Eng C. Referral for cancer genetics consultation: a review and compilation of risk assessment criteria. J Med Genet. 2004 Feb;41(2):81–91.
- Scheuner MT, Whitworth WC, McGruder H, Yoon PW, Khoury MJ. Familial risk assessment for early-onset coronary heart disease. Genet Med. 2006 Aug;8(8):525–31.
- Sweet KM, Bradley TL, Westman JA. Identification and referral of families at high risk for cancer susceptibility. J Clin Oncol. 2002 Jan;20(2):528–37.
- Kelly KM, Porter K, Remy A, Westman JA. Promotion of cancer family history awareness: Jameslink Cancer Risk Assessment Tool at community health fairs. J Genet Couns. 2008 Jun;17(3):274–82.
- Orlando LA, Wu RR, Myers RA, Buchanan AH, Henrich VC, Hauser ER, et al. Clinical utility of a Web-enabled risk-assessment and clinical decision support program. Genet Med. 2016 Oct;18(10):1020–8.
- Facio FM, Feero WG, Linn A, Oden N, Manickam K, Biesecker LG. Validation of My Family Health Portrait for six common heritable conditions. Genet Med. 2010 Jun;12(6):370–5.
- Orlando LA, Buchanan AH, Hahn SE, Christianson CA, Powell KP, Skinner CS, et al. Development and validation of a primary care-based family health history and decision support program (MeTree). N C Med J. 2013 Jul-Aug;74(4):287–96.
- Ozanne EM, Loberg A, Hughes S, Lawrence C, Drohan B, Semine A, et al. Identification and management of women at high risk for hereditary breast/ovarian cancer syndrome. Breast J. 2009 Mar-Apr;15(2):155–62.
- Wang C, Bickmore T, Bowen DJ, Norkunas T, Campion M, Cabral H, et al. Acceptability and feasibility of a virtual counselor (VICKY) to collect family health histories. Genet Med. 2015 Oct;17(10):822–30.
- Edelman EA, Lin BK, Doksum T, Drohan B, Edelson V, Dolan SM, et al. Implementation of an electronic genomic and family health history tool in primary prenatal care. Am J Med Genet C Semin Med Genet. 2014 Mar;166C(1):34–44.
- Baumgart LA, Postula KJ, Knaus WA. Initial clinical validation of Health Heritage, a patient-facing tool for personal and family history collection and cancer risk assessment. Fam Cancer. 2016 Apr;15(2):331–9.
- Acheson LS, Zyzanski SJ, Stange KC, Deptowicz A, Wiesner GL. Validation of a self-administered, computerized tool for collecting and displaying the family history of cancer. J Clin Oncol. 2006 Dec;24(34):5395–402.
- Fuller M, Myers M, Webb T, Tabangin M, Prows C. Primary care providers’ responses to patient-generated family history. J Genet Couns. 2010 Feb;19(1):84–96.
- Cohen SA, McIlvried DE. Impact of computer-assisted data collection, evaluation and management on the cancer genetic counselor’s time providing patient care. Fam Cancer. 2011 Jun;10(2):381–9.
- Hovick SR, Wilkinson AV, Ashida S, de Heer HD, Koehly LM. The impact of personalized risk feedback on Mexican Americans’ perceived risk for heart disease and diabetes. Health Educ Res. 2014 Apr;29(2):222–34.
- Wang C, Sen A, Ruffin MT 4th, Nease DE Jr, Gramling R, Acheson LS, et al.; Family HealthwareTM Impact Trial (FHITr) Group. Family history assessment: impact on disease risk perceptions. Am J Prev Med. 2012 Oct;43(4):392–8.
- Wu RR, Orlando LA, Himmel TL, Buchanan AH, Powell KP, Hauser ER, et al. Patient and primary care provider experience using a family health history collection, risk stratification, and clinical decision support tool: a type 2 hybrid controlled implementation-effectiveness trial. BMC Fam Pract. 2013 Aug;14(1):111.
- Koehly LM, Morris BA, Skapinsky K, Goergen A, Ludden A. Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer and colorectal cancer. BMC Public Health. 2015 Nov;15(1):1120.
- de Heer HD, de la Haye K, Skapinsky K, Goergen AF, Wilkinson AV, Koehly LM. Let’s Move Together: a randomized trial of the impact of family health history on encouragement and co-engagement in physical activity of Mexican-origin parents and their children. Health Educ Behav. 2017 Feb;44(1):141–52.
- Wijdenes M, Henneman L, Qureshi N, Kostense PJ, Cornel MC, Timmermans DR. Using web-based familial risk information for diabetes prevention: a randomized controlled trial. BMC Public Health. 2013 May;13(1):485.
- Thompson T, Seo J, Griffith J, Baxter M, James A, Kaphingst KA. “You don’t have to keep everything on paper”: african American women’s use of family health history tools. J Community Genet. 2013 Apr;4(2):251–61.
- Berger KA, Lynch J, Prows CA, Siegel RM, Myers MF. Mothers’ perceptions of family health history and an online, parent-generated family health history tool. Clin Pediatr (Phila). 2013 Jan;52(1):74–81.
- Arar N, Seo J, Abboud HE, Parchman M, Noel P. Veterans’ experience in using the online Surgeon General’s family health history tool. Per Med. 2011 Sep;8(5):523–32.
- Wang C, Gallo RE, Fleisher L, Miller SM. Literacy assessment of public health history tools for public health prevention. Public Health Genomics. 2011;14(4-5):222–37.
- Alston C, Berger Z, Brownlee S, Glyn E, Fowler FJ, Hall LK, et al [Internet]. Shared decision-making stretegies for best care: patient decision aids [Discussion Paper]. Washington (DC): Institute of Medicine; 2014. Available from: https://nam.edu/perspectives-2014-shared-decision-making-strategies-for-best-care-patient-decision-aids/.
- Eysenbach G, Köhler C. How do consumers search for and appraise health information on the world wide web? Qualitative study using focus groups, usability tests, and in-depth interviews. BMJ. 2002 Mar;324(7337):573–7.
- Sillence E, Briggs P, Harris P, Fishwick L. A framework for understanding trust factors in web-based health advice. Int J Hum Comput Stud. 2006;64(8):697–713.
- Owens KM, Marvin ML, Gelehrter TD, Ruffin MT 4th, Uhlmann WR. Clinical use of the Surgeon General’s “My Family Health Portrait” (MFHP) tool: opinions of future health care providers. J Genet Couns. 2011 Oct;20(5):510–25.
- Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000 Aug;23(4):334–40.
- Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010 Feb;33(1):77–84.
- Lipkus IM. Numeric, verbal, and visual formats of conveying health risks: suggested best practices and future recommendations. Med Decis Making. 2007 Sep-Oct;27(5):696–713.
- Zipkin DA, Umscheid CA, Keating NL, Allen E, Aung K, Beyth R, et al. Evidence-based risk communication: a systematic review. Ann Intern Med. 2014 Aug;161(4):270–80.
- Wallsten TS, Fillenbaum S, Cox JA. Base rate effects on the interpretations of probability and frequency expressions. J Mem Lang. 1986;25(5):571–87.
- Holtgraves T. Interpreting uncertainty terms. J Pers Soc Psychol. 2014 Aug;107(2):219–28.
- Fagerlin A, Zikmund-Fisher BJ, Ubel PA. Helping patients decide: ten steps to better risk communication. J Natl Cancer Inst. 2011 Oct;103(19):1436–43.
- Peters E, Västfjäll D, Slovic P, Mertz CK, Mazzocco K, Dickert S. Numeracy and decision making. Psychol Sci. 2006 May;17(5):407–13.
- Peters E. Beyond comprehension: the role of numeracy in judgments and decisions. Curr Dir Psychol Sci. 2012;21(1):31–5.
- Peters E, Hibbard J, Slovic P, Dieckmann N. Numeracy skill and the communication, comprehension, and use of risk-benefit information. Health Aff (Millwood). 2007 May-Jun;26(3):741–8.
- Han PK, Klein WM, Lehman TC, Massett H, Lee SC, Freedman AN. Laypersons’ responses to the communication of uncertainty regarding cancer risk estimates. Med Decis Making. 2009 May-Jun;29(3):391–403.
- Trevena LJ, Zikmund-Fisher BJ, Edwards A, Gaissmaier W, Galesic M, Han PK, et al. Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S7–7.
- Hibbard JH, Peters E. Supporting informed consumer health care decisions: data presentation approaches that facilitate the use of information in choice. Annu Rev Public Health. 2003;24(1):413–33.
- Zikmund-Fisher BJ. The right tool is what they need, not what we have: a taxonomy of appropriate levels of precision in patient risk communication. Med Care Res Rev. 2013 Feb;70(1 Suppl):37S–49S.
Cancer.org [Internet]. Atlanta: American Cancer Society: Lifetime risk of developing or dying from cancer. C2017 [cited 2018 Jun 12]. Available from: https://www.cancer.org/cancer/cancer-basics/lifetime-probability-of-developing-or-dying-from-cancer.html.
- de Bruin WB, Fischhoff B, Millstein SG, Halpern-Felsher BL. Verbal and numerical expressions of probability:“It’s a fifty–fifty chance.” Organ Behav Hum Decis Process. 2000 Jan;81(1):115–31.
- Bruine de Bruin W, Carman KG. Measuring risk perceptions: what does the excessive use of 50% mean? Med Decis Making. 2012 Mar-Apr;32(2):232–6.
- Waters EA, Sullivan HW, Nelson W, Hesse BW. What is my cancer risk? How internet-based cancer risk assessment tools communicate individualized risk estimates to the public: content analysis. J Med Internet Res. 2009 Jul;11(3):e33.
- Oeffinger KC, Fontham ET, Etzioni R, Herzig A, Michaelson JS, Shih YC, et al.; American Cancer Society. Breast cancer screening for women at average risk: 2015 guideline update from the American Cancer Society. JAMA. 2015 Oct;314(15):1599–614.
- Khera AV, Emdin CA, Drake I, Natarajan P, Bick AG, Cook NR, et al. Genetic risk, adherence to a healthy lifestyle, and coronary disease. N Engl J Med. 2016 Dec;375(24):2349–58.
- Han PK, Moser RP, Klein WM. Perceived ambiguity about cancer prevention recommendations: associations with cancer-related perceptions and behaviours in a US population survey. Health Expect. 2007 Dec;10(4):321–36.
- Azadmanjir Z, Safdari R, Ghazisaeidi M. From self-care for healthy people to self-management for cancer patients with cancer portals. Asian Pac J Cancer Prev. 2015;16(4):1321–5.
- Wolin KY, Dart H, Colditz GA. Eight ways to stay healthy after cancer: an evidence-based message. Cancer Causes Control. 2013 May;24(5):827–37.
- Emmons KM, Wong M, Puleo E, Weinstein N, Fletcher R, Colditz G. Tailored computer-based cancer risk communication: correcting colorectal cancer risk perception. J Health Commun. 2004 Mar-Apr;9(2):127–41.
- Sequist TD, Zaslavsky AM, Colditz GA, Ayanian JZ. Electronic patient messages to promote colorectal cancer screening: a randomized controlled trial. Arch Intern Med. 2011 Apr;171(7):636–41.
- Haas JS, Baer HJ, Eibensteiner K, Klinger EV, St Hubert S, Getty G, et al. A cluster raondomized trial of a personalized multi-condition risk asssessment in primary care. Am J Prev Med. 2017 Jan;52(1):100–5.
- Kinzie MB, Cohn WF, Julian MF, Knaus WA. A user-centered model for web site design: needs assessment, user interface design, and rapid prototyping. J Am Med Inform Assoc. 2002 Jul-Aug;9(4):320–30.
Article / Publication Details
Copyright / Drug Dosage / DisclaimerCopyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.