Value to Whom? The Patient Voice in the Value Discussion

Value in Health

Volumn 20, Issue 2, 2017, Pages 286-291

  Perfetto, Eleanor M ^a,b   Oehrlein, Elisabeth M ^a,b   Boutin, Marc ^a   Reid, Sarah ^a   Gascho, Eric ^a  

^a National Health Council   (United States)

^b UNIVERSITY OF MARYLAND   (United States)

Author keywords

clinical decision making; decision making; patient outcome assessment; patient preference; patient centered care

Indexed keywords

ARTICLE; FEEDBACK SYSTEM; HEALTH CARE ACCESS; HEALTH CARE POLICY; HUMAN; OUTCOME ASSESSMENT; PATIENT ADVOCACY; PATIENT CARE; PEER REVIEW; PRIORITY JOURNAL; CLINICAL DECISION MAKING; PATIENT PREFERENCE; PURCHASING; THEORETICAL MODEL;

CLINICAL DECISION-MAKING; HUMANS; MODELS, THEORETICAL; PATIENT OUTCOME ASSESSMENT; PATIENT PREFERENCE; PATIENT-CENTERED CARE; VALUE-BASED PURCHASING;

EID: 85013635863     PISSN: 10983015     EISSN: 15244733     Source Type: Journal    
DOI: 10.1016/j.jval.2016.11.014     Document Type: Article

References (44)

1. [1] Burwell, S.M., Setting value-based payment goals—HHS efforts to improve U.S. health care. N Engl J Med 372 (2015), 897–899.
2. [2] Neumann, P.J., Cohen, J.T., Measuring the value of prescription drugs. N Engl J Med 373 (2015), 2595–2597.
3. [3] Garrison, L.P. Jr, Cost-effectiveness and clinical practice guidelines: have we reached a tipping point?—an overview. Value Health 19 (2016), 512–515.
4. [4] Banta, D., Kristensen, F.B., Jonsson, E., A history of health technology assessment at the European level. Int J Technol Assess Health Care 25:Suppl. 1 (2009), 68–73.
5. [5] Oortwijn, W., Broos, P., Vondeling, H., et al. Mapping of health technology assessment in selected countries. Int J Technol Assess Health Care 29 (2013), 424–434.
6. [6] Yang, B.M., Interview: health technology assessment in Asia: an emerging trend. J Comp Eff Res 1 (2012), 221–224.
7. [7] Augustovski, F., Alcaraz, A., Caporale, J., et al. Institutionalizing health technology assessment for priority setting and health policy in Latin America: from regional endeavors to national experiences. Expert Rev Pharmacoecon Outcomes Res 15 (2015), 9–12.
8. [8] Schnipper, L.E., Davidson, N.E., Wollins, D.S., et al. American Society of Clinical Oncology statement: a conceptual framework to assess the value of cancer treatment options. J Clin Oncol 33 (2015), 2563–2577.
9. [9] Institute for Clinical and Economic Review. ICER value assessment framework. Available from: https://icer-review.org/methodology/icers-methods/icer-value-assessment-framework/. [Accessed July 20, 2016].
10. [10] National Comprehensive Cancer Network. NCCN clinical practice guidelines in oncology (NCCN guidelines®) with NCCN evidence blocks™. Available from: https://www.nccn.org/evidenceblocks/. [Accessed July 20, 2016].
11. [11] Memorial Sloan Kettering Cancer Center. DrugAbacus. Available from: http://www.drugabacus.org/. [Accessed July 20, 2016].
12. [12] Chandra, A., Shafrin, J., Dhawan, R., Utility of cancer value frameworks for patients, payers, and physicians. JAMA 315 (2016), 2069–2070.
13. [13] International Myeloma Foundation. International Myeloma Foundation (IMF) says controversial drug cost report could limit patient access to optimal treatment. Available from: http://myeloma.org/ArticlePage.action?articleId=4820. [Accessed July 19, 2016].
14. [14] Porter, M.E., What is value in health care?. N Engl J Med 363 (2010), 2477–2481.
15. [15] Zafar, S.Y., Alexander, S.C., Weinfurt, K.P., et al. Decision making and quality of life in the treatment of cancer: a review. Support Care Cancer 17 (2009), 117–127.
16. [16] Ubel, P.A., Beyond costs and benefits: understanding how patients make health care decisions. Oncologist 15:Suppl. 1 (2010), 5–10.
17. [17] Hajjaj, F., Salek, M., Basra, M., Finlay, A., Non-clinical influences on clinical decision-making: a major challenge to evidence-based practice. J R Soc Med 103 (2010), 178–187.
18. [18] Epstein, R.M., Street, R.L. Jr, The values and value of patient-centered care. Ann Fam Med 9 (2011), 100–103.
19. [19] Havrilesky, L.J., Alvarez Secord, A., Ehrisman, J.A., et al. Patient preferences in advanced or recurrent ovarian cancer. Cancer 120 (2014), 3651–3659.
20. [20] Food and Drug Administration. Voice of the patient: lung cancer. Available from: http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM379698.pdf. [Accessed July 21, 2016].
21. [21] Centers for Medicare & Medicaid Services. Medicare program; part B drug payment model: a proposed rule by the Centers for Medicare & Medicaid Services, 2016, 42 CFR 511.
22. [22] Whitty, J.A., An international survey of the public engagement practices of health technology assessment organizations. Value Health 16 (2013), 155–163.
23. [23] Wortley S, Wale J, Grainger D, Murphy P. Moving beyond the rhetoric of patient input in health technology assessment deliberations. Aust Health Rev (published online ahead of print May 26, 2016). doi: 10.1071/AH15216.
24. [24] Abelson, J., Wagner, F., DeJean, D., et al. Public and patient involvement in health technology assessment: a framework for action. Int J Technol Assess Health Care 32 (2016), 256–264.
25. [25] Boutin M. Cost of care or value of care? Ask the patient. Available from: https://morningconsult.com/opinions/cost-care-value-care-ask-patient/. [Accessed October 9, 2016].
26. [26] National Health Council. The patient voice in value: the National Health Council patient-centered value model rubric. Available from: http://www.nationalhealthcouncil.org/sites/default/files/Value-Rubric.pdf. [Accessed July 20, 2016].
27. [27] National Comprehensive Cancer Network. NCCN patient advocacy summit value in cancer care—patient perspectives. Available from: https://www.nccn.org/professionals/meetings/oncology_policy_program/pdf/2015_nccn_patient_advocacy_summit_summary.pdf. [Accessed October 9, 2016].
28. [28] Thiboldeaux K. Value for patients? Available from: http://www.huffingtonpost.com/kim-thiboldeaux/value-for-patients_b_5568371.html. [Accessed July 6, 2016].
29. [29] Institute for Clinical and Economic Review. A patient guide to open input. Available from: http://icer-review.org/wp-content/uploads/2016/02/ICER_Patient_Guide_to_Open_Input_071116.pdf. [Accessed October 9, 2016].
30. [30] Schnipper, L.E., Davidson, N.E., Wollins, D.S., et al. Updating the American Society of Clinical Oncology value framework: revisions and reflections in response to comments received. J Clin Oncol 34 (2016), 2925–2934.
31. [31] Staley, K., Doherty, C., It's not evidence, it's insight: bringing patients’ perspectives into health technology appraisal at NICE. Res Involvem Engagem 2 (2016), 1–12.
32. [32] National Health Council. Session: the patient voice in assessing value. December 2, 2015, Presented at: The National Health Council Washington Representatives Retreat, Annapolis, MD.
33. [33] Perfetto E, Oehrlein EM; M-CERSI Conference on Patient-Focused Drug Development Planning Committee. Assessing meaningful patient engagement in drug development: a definition, framework, and rubric. 2015. Available from: http://www.pharmacy.umaryland.edu/media/SOP/wwwpharmacyumarylandedu/centers/cersievents/pfdd/mcersi-pfdd-framework-rubric.pdf. [Accessed July 19, 2016].
34. [34] Patient-Centered Outcomes Research Institute. Engagement rubric. Available from: http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. [Accessed February 11, 2016].
35. [35] FH Foundation. FH Foundation welcomes the opportunity to comment on ICER's draft report on effectiveness, value, and pricing benchmarks for PCSK9 inhibitors for high cholesterol, specifically as it relates to the population affected by familial hypercholesterolemia (FH). Available from: https://thefhfoundation.org/media/FH-Foundation-Comments-ICER.pdf. [Accessed July 21, 2016].
36. [36] The National Health Council. Patient-centered value model rubric released: National Health Council shares guidance for assessing the value of new treatments. Available from: http://www.nationalhealthcouncil.org/patient-centered-value-model-rubric-released. [Accessed July 20, 2016].
37. [37] Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. 2001, National Academies Press, Washington, DC.
38. [38] Beal A, Sheridan S. Understanding the patient and family engagement rubric. Available from: http://www.pcori.org/assets/2014/06/PCORI-AcademyHealth-ARM-Beal-060914.pdf. [Accessed October 9, 2016].
39. [39] Patrick, D.L., Burke, L.B., Gwaltney, C.J., et al. Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force Report: part 1—eliciting concepts for a new PRO instrument. Value Health 14 (2011), 967–977.
40. [40] The Institute for Clinical and Economic Review. ICER to review treatments for rheumatoid arthritis and psoriatic arthritis. Available from: https://icer-review.org/announcements/topic-announcement-ra-psa/. [Accessed July 20, 2016].
41. [41] Perfetto, E.M., Burke, L., Oehrlein, E.M., Epstein, R.S., Patient-focused drug development: a new direction for collaboration. Med Care 53 (2015), 9–17.
42. [42] Patient-Centered Outcomes Research Institute. What we mean by engagement. Available from: http://www.pcori.org/funding-opportunities/what-we-mean-engagement. [Accessed August 20, 2015].
43. [43] Hoos, A., Anderson, J., Boutin, M., et al. Partnering with patients in the development and lifecycle of medicines: a call for action. Ther Innov Regul Sci 49 (2015), 929–939.
44. [44] Perfetto, E.M., Balch, A., Sennet, C., Pearson, S., The patient voice in value: the NHC patient-centeredness value model rubric, 2016 Available from: https://nhcouncil.adobeconnect.com/p2tfj2nr9e4/?launcher=false&fcsContent=true&pbMode=normal.