Skip to main content
SpringerLink
Log in

Applying theory to characterize impediments to dissemination of community-facing family health history tools: a review of the literature

  • Review
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

Uptake of community-facing family health history (FHH) tools to identify those at highest risk of disease and target prevention efforts has been consistently low. This review uses the diffusion of innovations (DOI) as a framework to organize the FHH evidence base and identify potential strategies to improve uptake of community-facing FHH tools. Methods for this literature review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. We completed systematic searches in PubMed, Embase, and Web of Science databases for studies from 2009 to 2017 and hand searched bibliographies of relevant literature to identify additional articles. We abstracted and synthesized results, which were then organized by the DOI including the innovation–decision making process and characteristics of the innovation likely to influence diffusion (e.g., compatibility, relative advantage, complexity, trialability, observa/bility). Of the 290 unique articles identified, 65 were eligible for full-text review after title and abstract screening; a total of 27 were included in the final abstraction. Eleven unique tools were identified. The most commonly used tool was the Surgeon General’s My Family Health Portrait (n =9/27). Only six studies directly evaluated participant perceptions shown to be associated with tool uptake. Studies tended to focus on improving compatibility by customizing tools to the target population’s needs and use of educational interventions. Results from this review suggest the need to evaluate strategies to increase the pace of uptake of community-facing FHH tools. These include pragmatic trials that compare different approaches to engage and evaluate participant perceptions of the relative advantage and complexity of tools. Ancillary support strategies may include collaborations with community networks to facilitate use and implementation study designs for rigorous evaluation.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  • Acheson LS, Wiesner GL, Zyzanski SJ, Goodwin MA, Stange KC (2000) Family history-taking in community family practice: implications for genetic screening. Genet Med 2(3):180–185

    PubMed  CAS  Google Scholar 

  • Acheson LS, Zyzanski SJ, Stange KC, Deptowicz A, Wiesner GL (2006) Validation of a self-administered, computerized tool for collecting and displaying the family history of cancer. J Clin Oncol 24(34):5395–5402

    PubMed  Google Scholar 

  • Acheson LS, Wang C, Zyzanski SJ, Lynn A, Ruffin MT 4th, Gramling R, Rubinstein WS, O’Neill SM, Nease DE Jr, Family Healthware Impact Trial (FHITr) Group (2010) Family history and perceptions about risk and prevention for chronic diseases in primary care: a report from the Family Healthware Impact Trial. Genet Med 12(4):212–218

    PubMed  PubMed Central  Google Scholar 

  • American Diabetes Association (2015) Classification and diagnosis of diabetes. Diabetes Care 38(Supplement 1):S8–S16

    Google Scholar 

  • American Medical Association,2018 Family Medical History in Disease Prevention

  • Arar N, Seo J, Abboud HE, Parchman M, Noel P (2011) Veterans’ experience in using the online Surgeon General’s family health history tool. Personalized Medicine 8(5):523–532

    PubMed  PubMed Central  Google Scholar 

  • Arar N, Delgado E, Lee S, Abboud HE (2013) Improving learning about familial risks using a multicomponent approach: the GRACE program. Personalized Medicine 10(1):35–44

    PubMed  PubMed Central  CAS  Google Scholar 

  • Awareness of family health history as a risk factor for disease--United States (2004) MMWR Morb Mortal Wkly Rep 53(44):1044–1047

    Google Scholar 

  • Bates BR (2005) Care of the self and patient participation in genetic discourse: a Foucauldian reading of the surgeon general's "my family health portrait" program. J Genet Couns 14(6):423–434

    PubMed  Google Scholar 

  • Beadles CA, Ryanne Wu R, Himmel T, Buchanan AH, Powell KP, Hauser E, Henrich VC, Ginsburg GS, Orlando LA (2014) Providing patient education: impact on quantity and quality of family health history collection. Familial Cancer 13(2):325–332

    PubMed  Google Scholar 

  • Benjamin C, Booth K, Ellis I (2003) A prospective comparison study of different methods of gathering self-reported family history information for breast cancer risk assessment. J Genet Couns 12(2):151–170

    PubMed  Google Scholar 

  • Berg AO, Baird MA, Botkin JR, Driscoll DA, Fishman PA, Guarino PD, Hiatt RA, Jarvik GP, Millon-Underwood S, Morgan TM, Mulvihill JJ, Pollin TI, Schimmel SR, Stefanek ME, Vollmer WM, Williams JK (2009) National Institutes of Health state-of-the-science conference statement: family history and improving health. Ann Intern Med 151(12):872–877

    PubMed  Google Scholar 

  • Buchanan AH, Christianson CA, Himmel T, Powell KP, Agbaje A, Ginsburg GS, Henrich VC, Orlando LA (2015) 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 24(1):179–188

    PubMed  Google Scholar 

  • Chambers DA, Feero WG, Khoury MJ (2016) Convergence of implementation science, precision medicine, and the learning health care system: a new model for biomedical research. JAMA 315(18):1941–1942

    PubMed  PubMed Central  CAS  Google Scholar 

  • Cohn WF, Ropka ME, Pelletier SL, Barrett JR, Kinzie MB, Harrison MB, Liu Z, Miesfeldt S, Tucker AL, Worrall BB, Gibson J, Mullins IM, Elward KS, Franko J, Guterbock TM, Knaus WA (2010) Health heritage (c), a web-based tool for the collection and assessment of family health history: initial user experience and analytic validity. Public Health Genomics 13(7–8):477–491

    PubMed  CAS  Google Scholar 

  • Dearing JW (2009) Applying diffusion of innovation theory to intervention development. Res Soc Work Pract 19(5):503–518

    PubMed  PubMed Central  Google Scholar 

  • Eccles BK et al (2015) Understanding of BRCA VUS genetic results by breast cancer specialists. BMC Cancer 15:936

    PubMed  PubMed Central  CAS  Google Scholar 

  • Falk N, Cole A, Meredith TJ (2018) Evaluation of suspected dementia. Am Fam Physician 97(6):398–405

    PubMed  Google Scholar 

  • Foster PP, Smith A (2015) A Health literacy program using family health history for young black rural students: implications for reducing health disparities. J Health Care Poor Underserved 26(3):662–667

    PubMed  Google Scholar 

  • Global Alliance for Genomics & Health (2018) Genomic data toolkit ; Available from: https://www.ga4gh.org/genomic-data-toolkit/

  • Guttmacher AE, Collins FS, Carmona RH (2004) The family history--more important than ever. N Engl J Med 351(22):2333–2336

    PubMed  CAS  Google Scholar 

  • Haussmann R et al (2018) Family history of Alzheimer’s disease and subjective memory performance. Am J Alzheimers Dis Other Dement:p. 1533317518775033 https://www.ncbi.nlm.nih.gov/pubmed/29734820

  • Hoyt R et al (2013) Digital family histories for data mining. Perspect Health Inf Manag (10):1a

  • Hulse NC et al (2011) Development and early usage patterns of a consumer-facing family health history tool. AMIA Annu Symp Proc 2011:578–587

    PubMed  PubMed Central  Google Scholar 

  • Imes CC, Lewis FM, Austin MA, Dougherty CM (2015) My family medical history and me: feasibility results of a cardiovascular risk reduction intervention. Public Health Nurs 32(3):246–255

    PubMed  Google Scholar 

  • Jackson Laboratory.2018 Family history collection and risk assessment. Available from: https://www.jax.org/education-and-learning/clinical-and-continuing-education/family-history

  • Kaphingst K et al (2011) Educating underserved Latino communities about family health history using lay health advisors. Public Health Genomics 14(4–5):211–221

    PubMed  CAS  Google Scholar 

  • Kaphingst KA, Goodman M, Pandya C, Garg P, Stafford J, Lachance C (2012) Factors affecting frequency of communication about family health history with family members and doctors in a medically underserved population. Patient Educ Couns 88(2):291–297

    PubMed  Google Scholar 

  • Koehly LM, Ashida S, Goergen AF, Skapinsky KF, Hadley DW, Wilkinson AV (2011) Willingness of Mexican-American adults to share family health history with healthcare providers. Am J Prev Med 40(6):633–636

    PubMed  PubMed Central  Google Scholar 

  • Koehly LM, Morris BA, Skapinsky K, Goergen A, Ludden A (2015) 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 15

  • Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gøtzsche PC, Ioannidis JP, Clarke M, Devereaux PJ, Kleijnen J, Moher D (2009) The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. Ann Intern Med 151(4):W65–W94

    PubMed  Google Scholar 

  • Lucassen A, Watson E, Harcourt J, Rose P, O’Grady J (2001) Guidelines for referral to a regional genetics service: GPs respond by referring more appropriate cases. Fam Pract 18(2):135–140

    PubMed  CAS  Google Scholar 

  • MacVaugh J, Schiavone F (2010) Limits to the diffusion of innovation: a literature review and integrative model. Eur J Innov Manag 13(2):197–221

    Google Scholar 

  • Malen R, Knerr S, Delgado F, Fullerton SM, Thompson B (2016) Rural Mexican-Americans’ perceptions of family health history, genetics, and disease risk: implications for disparities-focused research dissemination. J Community Genet 7(1):91–96

    PubMed  Google Scholar 

  • Moonesinghe R, Beckles GLA, Liu T, Khoury MJ (2018) The contribution of family history to the burden of diagnosed diabetes, undiagnosed diabetes, and prediabetes in the United States: analysis of the National Health and Nutrition Examination Survey, 2009-2014. Genet Med 20:1159–1166

    PubMed  PubMed Central  Google Scholar 

  • Moore PJ, Gratzer W, Lieber C, Edelson V, O’Leary J, Terry SF (2012) Iona College community centered family health history project: lessons learned from student focus groups. J Genet Couns 21(1):127–135

    PubMed  Google Scholar 

  • Murray MF, Giovanni MA, Klinger E, George E, Marinacci L, Getty G, Brawarsky P, Rocha B, Orav EJ, Bates DW, Haas JS (2013) Comparing electronic health record portals to obtain patient-entered family health history in primary care. J Gen Intern Med 28(12):1558–1564

    PubMed  PubMed Central  Google Scholar 

  • Murthy VS, Garza MA, Almario DA, Vogel KJ, Grubs RE, Gettig EA, Wilson JW, Thomas SB (2011) Using a family history intervention to improve cancer risk perception in a black community. J Genet Couns 20(6):639–649

    PubMed  PubMed Central  Google Scholar 

  • National Human Genome Research Institute (2016) NHGRI family history tool meeting tool description. Available from: https://www.genome.gov/pages/health/healthcareprovidersinfo/fhht_workshop_short_descriptions.pdf

  • Newcomb P, Canclini S, Cauble D, Raudonis B, Golden P (2014) Pilot trial of an electronic family medical history in US faith-based communities. J Prim Care Community Health 5(3):198–201

    PubMed  Google Scholar 

  • Nilsen P (2015) Making sense of implementation theories, models and frameworks. Implement Sci 10:53

    PubMed  PubMed Central  Google Scholar 

  • Noar SM, Benac CN, Harris MS (2007) Does tailoring matter? Meta-analytic review of tailored print health behavior change interventions. Psychol Bull 133(4):673–693

    PubMed  Google Scholar 

  • Office of the Surgeon General, 2016 The Surgeon General’s Family Health History Initiative.

  • O'Leary J et al (2011) Community-centered family health history: a customized approach to increased Health communication and awareness. Prog Community Health Partnersh Res Educ Action 5(2):113–122

    Google Scholar 

  • Orlando LA, Henrich VC, Hauser ER, Wilson C, Ginsburg GS, Genomedical Connection (2013) The genomic medicine model: an integrated approach to implementation of family health history in primary care. Pers Med 10(3):295–306

    CAS  Google Scholar 

  • Orlando LA, Wu RR, Myers RA, Buchanan AH, Henrich VC, Hauser ER, Ginsburg GS (2016) Clinical utility of a web-enabled risk-assessment and clinical decision support program. Genetics in Medicine 18(10):1020–1028

    PubMed  Google Scholar 

  • Centers for Disease Control and Prevention (2010) ACCE model process for evaluating genetic tests; Available from: https://www.cdc.gov/genomics/gtesting/acce/

  • Pyeritz RE (2012) The family history: the first genetic test, and still useful after all those years? Genet Med 14(1):3–9

    PubMed  Google Scholar 

  • Qureshi N, Carroll JC, Wilson B, Santaguida P, Allanson J, Brouwers M, Raina P (2009) The current state of cancer family history collection tools in primary care: a systematic review. Genet Med 11(7):495–506

    PubMed  Google Scholar 

  • Rich EC, Burke W, Heaton CJ, Haga S, Pinsky L, Short MP, Acheson L (2004) Reconsidering the family history in primary care. J Gen Intern Med 19(3):273–280

    PubMed  PubMed Central  Google Scholar 

  • Roberts MC, Kennedy AE, Chambers DA, Khoury MJ (2017a) The current state of implementation science in genomic medicine: opportunities for improvement. Genet Med 19(8):858–863

    PubMed  PubMed Central  Google Scholar 

  • Roberts MC et al (2017b) The current state of funded NIH grants in implementation science in genomic medicine: a portfolio analysis. Genet Med https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5920776/

  • Rodriguez VM et al (2016) Family ties: the role of family context in family health history communication about cancer. J Health Commun 21(3):346–355

    PubMed  PubMed Central  Google Scholar 

  • Rogers EM (1962) The diffusion of innovations. Free Press, New York

    Google Scholar 

  • Rogers EM (2003) Diffusion of innovations. Free Press, New York, London

    Google Scholar 

  • Rose PW et al (2004) Improving the ascertainment of families at high risk of colorectal cancer: a prospective GP register study. Br J Gen Pract 54(501):267–271

    PubMed  PubMed Central  Google Scholar 

  • Ruffin MTt, Nease DE, Sen A, Pace WD, Wang C, Acheson LS, Rubinstein WS, O’Neill S, Gramling R, for The Family History Impact Trial (fhitr) Group (2011) Effect of preventive messages tailored to family history on health behaviors: the Family Healthware Impact Trial. Ann Fam Med 9(1):3–11

    PubMed  PubMed Central  Google Scholar 

  • Simmons BB, Hartmann B, Dejoseph D (2011) Evaluation of suspected dementia. Am Fam Physician 84(8):895–902

    PubMed  Google Scholar 

  • Thompson T, Seo J, Griffith J, Baxter M, James A, Kaphingst KA (2013) “You don't have to keep everything on paper”: African American women’s use of family health history tools. J Community Genet 4(2):251–261

    PubMed  PubMed Central  Google Scholar 

  • Thompson T, Seo J, Griffith J, Baxter M, James A, Kaphingst KA (2015) The context of collecting family health history: examining definitions of family and family communication about health among African American women. J Health Commun 20(4):416–423

    PubMed  PubMed Central  Google Scholar 

  • Thompson T, Pérez M, Kreuter M, Margenthaler J, Colditz G, Jeffe DB (2017) Perceived social support in African American breast cancer patients: predictors and effects. Soc Sci Med 192:134–142

    PubMed  PubMed Central  Google Scholar 

  • U.S. Preventive Services Task Force, 2015 Abnormal blood glucose and type 2 diabetes mellitus: Screeninghttps://www.ncbi.nlm.nih.gov/pubmed/26501513

  • Valdez R, Yoon PW, Qureshi N, Green RF, Khoury MJ (2010) Family history in public health practice: a genomic tool for disease prevention and health promotion. Annu Rev Public Health 31:69–87

    PubMed  Google Scholar 

  • Wallace JP et al (2009) A family history demonstration project among women in an urban Appalachian community. Prog Community Health Partnersh 3(2):155–163

    PubMed  Google Scholar 

  • Wang C, Gallo RE, Fleisher L, Miller SM (2011) Literacy assessment of family health history tools for public health prevention. Public Health Genomics 14(4–5):222–237

    PubMed  CAS  Google Scholar 

  • Wang C, Bickmore T, Bowen DJ, Norkunas T, Campion MA, Cabral H, Winter M, Paasche-Orlow M (2015a) Acceptability and feasibility of a virtual counselor (VICKY) to collect family health histories. Genetics in Medicine 17(10):822–830

    PubMed  PubMed Central  Google Scholar 

  • Wang C, Sen A, Plegue M, Ruffin MT IV, O'Neill SM, Rubinstein WS, Acheson LS, Yoon PW, Valdez R, Irizarry-de la Cruz M, Khoury MJ, Jorgensen C, Scheuner MT, Rubinstein WS, O'Neill SM, Rothrock N, Beaumont JL, Khan S, Ali D, Ruffin MT, Nease D, Acheson LS, Zyzanski SJ, Wiesner GL, Werner J, Pace WD, Galliher JM, Brandt E, Wang C, Gramling R, Starzyk EJ (2015b) Impact of family history assessment on communication with family members and health care providers: a report from the Family Healthware (TM) Impact Trial (FHITr). Prev Med 77:28–34

    PubMed  PubMed Central  Google Scholar 

  • Welch BM, O'Connell N, Schiffman JD (2015a) 10 years later: assessing the impact of public health efforts on the collection of family health history. Am J Med Genet A 167(9):2026–2033

    Google Scholar 

  • Welch BM, Dere W, Schiffman JD (2015b) Family health history the case for better tools. JAMA 313(17):1711–1712

    PubMed  Google Scholar 

  • Williams JL, Collingridge DS, Williams MS (2011) Primary care physicians’ experience with family history: an exploratory qualitative study. Genet Med 13(1):21–25

    PubMed  Google Scholar 

  • Wu RR, Orlando LA (2015) Implementation of health risk assessments with family health history: barriers and benefits. Postgrad Med J 91(1079):508–513

    PubMed  Google Scholar 

  • Wu RR et al (2015) Protocol for the Implementation, adoption, and utility of family history in diverse care settings study. Implement Sci 10:163

    PubMed  PubMed Central  Google Scholar 

  • Yoon PW et al (2002) Can family history be used as a tool for public health and preventive medicine. Genet Med 4(4):304–310

    PubMed  Google Scholar 

  • Yoon PW, Scheuner MT, Khoury MJ (2003) Research priorities for evaluating family history in the prevention of common chronic diseases. Am J Prev Med 24(2):128–135

    PubMed  Google Scholar 

  • Yoon PW et al (2009) Developing family healthware, a family history screening tool to prevent common chronic diseases. Prev Chronic Dis (6):1

  • Zhang X et al (2015) Using diffusion of innovation theory to understand the factors impacting patient acceptance and use of consumer e-health innovations: a case study in a primary care clinic. BMC Health Serv Res 15:71

    PubMed  PubMed Central  Google Scholar 

Download references

Acknowledgments

We would like to acknowledge Cam Escoffery for her comments on the discussion section of this manuscript.

Author information

Authors and Affiliations

  1. Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA, 30308, USA

    Caitlin G. Allen, Yue Guan & Colleen M. McBride

  2. Feinberg School of Medicine, Northwestern University, 420 East Superior Street, Chicago, IL, 60611, USA

    Debra Duquette

Authors
  1. Caitlin G. Allen
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Debra Duquette
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Yue Guan
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Colleen M. McBride
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Caitlin G. Allen.

Ethics declarations

This is a review of existing literature. No informed consent was required.

Conflict of interest

The authors declare that they have no conflicts of interest.

Human rights

This article does not contain any studies with human participants performed by any of the authors.

Welfare of animals

This article does not contain any studies with animals performed by any of the authors.

Informed consent

This study does not involve human participants and informed consent was therefore not required

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

ESM 1

(DOCX 40.6 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Allen, C.G., Duquette, D., Guan, Y. et al. Applying theory to characterize impediments to dissemination of community-facing family health history tools: a review of the literature. J Community Genet 11, 147–159 (2020). https://doi.org/10.1007/s12687-019-00424-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-019-00424-9

Search

Navigation