Skip to main content
Log in

Walking in the Shoes of Patients, Not Just in Their Genes: A Patient-Centered Approach to Genomic Medicine

  • Current Opinion
  • Published:
The Patient - Patient-Centered Outcomes Research Aims and scope Submit manuscript

Abstract

Genomic technologies are increasing the precision with which clinicians can assess an individual patient’s risk for developing diseases and identify which patients are likely to benefit from specific treatments. Also advocating for a shift away from a one-size-fits-all approach is the growing emphasis on “patient-centered” care. Using examples from breast cancer, we make a case for why, in order to optimize patient health outcomes, genomic medicine will need to be practiced within a patient-centered framework. We present a six-function conceptual framework for patient-centered care and discuss findings from a national survey evaluating the patient-centeredness of care delivered in the USA.

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

Access this article

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Institute of Medicine. The value of genetic and genomic technologies: workshop summary. Washington, DC: The National Academies Press; 2010.

    Google Scholar 

  2. Collins FS, Guttmacher AE. Genetics moves into the medical mainstream. JAMA. 2001;286(18):2322–4.

    Article  CAS  PubMed  Google Scholar 

  3. Issa AM. Personalized medicine and the practice of medicine in the 21st century. Mcgill J Med. 2007;10(1):53–7.

    PubMed Central  PubMed  Google Scholar 

  4. Epstein RM, Fiscella K, Lesser CS, Stange KC. Why the nation needs a policy push on patient-centered health care. Heath Aff (Millwood). 2010;29:1489–95.

    Article  Google Scholar 

  5. Davis K, Schoenbaum SC, Audet AM. A 2020 vision of patient-centered primary care. J Gen Intern Med. 2005;20(10):953–7.

    Article  PubMed Central  PubMed  Google Scholar 

  6. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press; 2001.

    Google Scholar 

  7. Epstein RM, Street RL, Jr. Patient-centered communication in cancer care: promoting healing and reducing suffering. Bethesda: National Cancer Institute, NIH publication no. 07-6225; 2007.

  8. Street RL Jr, Makoul G, Arora NK, Epstein RD. How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Edu Couns. 2009;74:295–301.

    Article  Google Scholar 

  9. Zuboff S, Maxmin J. The support economy: why corporations are failing individuals and the next episode of capitalism. New York: Viking; 2002. p. 2002.

    Google Scholar 

  10. Institute of Medicine. Cancer care for the whole patient: meeting psychosocial health needs. Washington, DC: The National Academies Press; 2008.

    Google Scholar 

  11. Han PKJ, Klein WMP, Arora NK. Varieties of uncertainty in healthcare: a conceptual taxonomy. Med Decis Making. 2011;31:828–38.

    Article  PubMed Central  PubMed  Google Scholar 

  12. Nelson DE, Rimer BK, Kreps GL, Hesse BW, Viswanath KV, Croyle RT, Willis G, Arora NK, Weinstein N, Alden S. The Health Information National Trends Survey (HINTS): development, design, and dissemination. J Health Commun. 2004;9:1–18.

    Article  Google Scholar 

  13. Finney Rutten LJ, Davis T, Beckjord EB, Blake K, Moser RP, Hesse BW. Picking up the pace: changes in method and frame for the Health Information National Trends Survey (2011–2014). J Health Commun. 2012;17:979–89.

    Article  PubMed Central  PubMed  Google Scholar 

  14. Rutten LJF, Hesse BW, Moser RP, Kreps GL, editors. Building the Evidence Base in Cancer Communication. Cresskill: Hampton Press; 2011.

    Google Scholar 

  15. Novelli WD, Halvorson GC, Santa J. Recognizing an opinion: findings from the IOM evidence communication innovation collaborative. JAMA. 2013;308:1531–2.

    Article  Google Scholar 

  16. Bombard Y, Bach PB, Offit K. Translating genomics in cancer care. J Natl Compr Cancer Netw. 2013;11(11):1343–53.

    CAS  Google Scholar 

  17. Nelson HD, Huffman LH, Fu R, Harris EL. U.S. Preventive Services Task Force. Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: systematic evidence review for the U.S. Preventive Services Task Force. Ann Intern Med. 2005;143(5):362–79.

    Article  CAS  PubMed  Google Scholar 

  18. McCarthy AM, Armstrong K. The role of testing for BRCA1 and BRCA2 mutations in cancer prevention. JAMA Intern Med. 2014;174(7):1023–4.

    Article  PubMed Central  PubMed  Google Scholar 

  19. Jolie A. My medical choice. The New York Times. http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html. 14 May 2013.

  20. Neporent L. Angelina Jolie’s double mastectomy fueling national debate. http://abcnews.go.com/Health/angelina-jolies-double-mastectomy-fueling-national-debate/story?id=19315336. 4 June 2013.

  21. Matloff ET. The Angelina effect: rising interest in genetic testing creates opportunities for patients—and profit. Am J Manag Care. 2014;20(special issue 3):SP67.

    Google Scholar 

  22. Connors LM, Voian N, Shi Y, Lally RM, Edge S. Decision making after BRCA genetic testing: down the road of transition. Clin J Oncol Nurs. 2014;18(3):E58–63.

    Article  PubMed  Google Scholar 

  23. Hesse-Biber S. The genetic testing experience of BRCA-positive women: deciding between surveillance and surgery. Qual Health Res. 2014;24(6):773–89.

    Article  PubMed  Google Scholar 

  24. Stan DL, Shuster LT, Wick MJ, Swanson CL, Pruthi S, Bakkum-Gamez JN. Challenging and complex decisions in the management of the BRCA mutation carrier. J Womens Health. 2013;22(10):825–34.

    Article  Google Scholar 

  25. Carlson JJ, Roth JA. The impact of the Oncotype Dx breast cancer assay in clinical practice: a systematic review and meta-analysis. Breast Cancer Res Treat. 2013;141(1):13–22.

    Article  PubMed Central  PubMed  Google Scholar 

  26. Tzeng JP, Mayer D, Richman AR, et al. Women’s experiences with genomic testing for breast cancer recurrence risk. Cancer. 2010;116:1992–2000.

    Article  PubMed  Google Scholar 

  27. Lo SS, Mumby PB, Norton J, et al. Prospective multicenter study of the impact of the 21-gene recurrence score assay on medical oncologist and patient adjuvant breast cancer treatment selection. J Clin Oncol. 2010;28(10):1671–6.

    Article  PubMed  Google Scholar 

  28. Bombard Y, Rozmovits L, Trudeau ME, Leighl NB, Deal K, Marshall DA. Patients’ perceptions of gene expression profiling in breast cancer treatment decisions. Curr Oncol. 2014;21(2):e203–11.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  29. Institute of Medicine. Improving Palliative Care for Cancer: Summary and Recommendations. Washington, DC: The National Academies Press; 2001.

    Google Scholar 

  30. Loprinzi CL, Wolf SL, Barton DL, Laack NN. Symptom management in premenopausal patients with breast cancer. Lancet Oncol. 2008;9(10):993–1001.

    Article  PubMed  Google Scholar 

  31. Yoon J, Malin JL, Tisnado DM, Tao ML, Adams JL, Timmer MJ, Ganz PA, Kahn KL. Symptom management after breast cancer treatment: is it influenced by patient characteristics? Breast Cancer Res Treat. 2008;108(1):69–77.

    Article  PubMed  Google Scholar 

  32. Kent EE, Mitchell SA, Oakley-Girvan I, Arora NK. The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors. Support Care Cancer. 2014;22(1):163–72.

    Article  PubMed  Google Scholar 

  33. van Ryn M, Phelan S, Arora NK, Haggstrom D, Jackson GL, Zafar Y, Griffin J, Zullig L, Provenzale D, Yeazel M, Jindal R, Clauser S. Patient-reported quality of symptom management among colorectal cancer patients in the VA. J Clin Oncol. 2014;32(8):809–15.

    Article  PubMed Central  PubMed  Google Scholar 

  34. Lee JT, Bridges JF, Shockney L. Can pharmacoeconomics and outcomes research contribute to the empowerment of women affected by breast cancer? Expert Rev Pharmacoecon Outcomes Res. 2008;8(1):73–9.

    Article  PubMed  Google Scholar 

  35. Katz SJ, Morrow M. Addressing overtreatment in breast cancer: the doctor’s dilemma. Cancer. 2013;119(20):3584–8.

    PubMed  Google Scholar 

  36. Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L. The continuum of translation research in genome medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet Med. 2007;9:665–74.

    Article  PubMed  Google Scholar 

  37. Birnbaum M. A conversation with Donald Berwick on implementing national health reform. J Health Polit Policy Law. 2012;37(4):709–27.

    Article  Google Scholar 

  38. Selby JV, Lipstein SH. PCORI at 3 years—progress, lessons, and plans. N Engl J Med. 2014;370(7):592–5.

    Article  CAS  PubMed  Google Scholar 

  39. Stange KC, Nutting PA, Miller WL, et al. Defining and measuring the patient-centered medical home. J Gen Intern Med. 2010;25(6):601–12.

    Article  PubMed Central  PubMed  Google Scholar 

  40. Bitton A, Martin C, Landon BE. A nationwide survey of patient centered medical home demonstration projects. J Gen Intern Med. 2010;25(6):584–92.

    Article  PubMed Central  PubMed  Google Scholar 

  41. Bao Y, Casalino LP, Pincus HA. Behavioral health and health care reform models: patient-centered medical home, health home, and accountable care organization. J Behav Health Serv Res. 2013;40(1):121–32.

    Article  PubMed Central  PubMed  Google Scholar 

  42. Larson BK, Van Citters AD, Kreindler SA, et al. Insights from transformations under way at four Brookings-Dartmouth accountable care organization pilot sites. Health Aff (Millwood). 2012;31(11):2395–406.

    Article  PubMed  Google Scholar 

  43. Centers for Medicare and Medicaid Services (CMS), HHS. Medicare program; hospital inpatient prospective payment systems for acute care hospitals and the long-term care hospital prospective payment system and fiscal year 2014 rates; quality reporting requirements for specific providers; hospital conditions of participation; payment policies related to patient status. Final rules. Fed Regist. 2013;78:50495–1040.

    Google Scholar 

  44. Institute of Medicine. Evidence-based medicine and the changing nature of health care: 2007 IOM Annual Meeting Summary. Washington, DC: The National Academies Press; 2008.

    Google Scholar 

  45. Stead WW, Lin HS, editors. Computational technology for effective health care: immediate steps and strategic directions. Washington, DC: National Academies Press; 2009.

    Google Scholar 

  46. Clauser SB, Wagner EH, Aiello Bowles EJ, Tuzzio L, Greene SM. Improving modern cancer care through information technology. Am J Prev Med. 2011;40(5 Suppl 2):S198–207.

    Article  PubMed Central  PubMed  Google Scholar 

Download references

Acknowledgments

This article reflects the personal opinions of the authors and does not necessarily represent any official position of the National Cancer Institute, National Institutes of Health, or the Patient-Centered Outcomes Research Institute. The authors wish to thank Muin Khoury, MD, PhD for his helpful feedback on an initial draft of the manuscript.

Conflict of Interest

None of the authors have any conflict of interest.

Authors contribution

All authors contributed to the conceptualization, writing, and final approval of the manuscript.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Neeraj K. Arora.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Arora, N.K., Hesse, B.W. & Clauser, S.B. Walking in the Shoes of Patients, Not Just in Their Genes: A Patient-Centered Approach to Genomic Medicine. Patient 8, 239–245 (2015). https://doi.org/10.1007/s40271-014-0089-5

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40271-014-0089-5

Keywords

Navigation