Volume 14 Issue 4
Jul.  2023
Turn off MathJax
Article Contents
GAO Yicheng, XIA Ruyu, CHAI Qianyun, FENG Yuting, WANG Yaqi, LUO Minjing, FEI Yutong. Organizing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development[J]. Medical Journal of Peking Union Medical College Hospital, 2023, 14(4): 875-880. doi: 10.12290/xhyxzz.2022-0528
Citation: GAO Yicheng, XIA Ruyu, CHAI Qianyun, FENG Yuting, WANG Yaqi, LUO Minjing, FEI Yutong. Organizing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development[J]. Medical Journal of Peking Union Medical College Hospital, 2023, 14(4): 875-880. doi: 10.12290/xhyxzz.2022-0528

Organizing Patient Panel: Suggestions on Incorporating Patient's Values and Preferences into Guideline Development

doi: 10.12290/xhyxzz.2022-0528
Funds:

Key Research and Development Program of Xinjiang Uygur Autonomous Region 2021B03006-4

More Information
  • Corresponding author: FEI Yutong, E-mail: yutong_fei@163.com
  • Received Date: 2022-09-19
  • Accepted Date: 2022-10-24
  • Available Online: 2022-11-30
  • Publish Date: 2023-07-30
  • As an emerging international research hotspot, the development of guidelines with patient participation has seen great differences in related methodological research in China and abroad. This paper advocates the establishment of patient panel, and discusses the working methods of patient panel, the source and selection of patient representatives, participation phases, management, and support. Methodological optimization suggestions are also proposed, such as the sustainability of patients, structuring and two-way communication mode made by a consensus expert group involving patients' values and preferences, in order to provide a reference for the development of patient participation guidelines in China.
  • loading
  • [1] Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research[J]. Res Involv Engagem, 2017, 3: 13. doi:  10.1186/s40900-017-0062-2
    [2] British HIV Association. British HIV Association. Guideline Development Manual[EB/OL]. (2021-10)[2022-04-18]. https://www.bhiva.org/GuidelineDevelopmentManual.
    [3] American Academy of Neurology. Clinical practice guideline process manual[EB/OL]. (2017-06-17)[2022-04-18]. https://www.aan.com/practice/what-are-clinical-practice-guidelines.
    [4] Légaré F, Boivin A, van der Weijden T, et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs[J]. Med Decis Making, 2011, 31: E45-E74. doi:  10.1177/0272989X11424401
    [5] 王明辉, 张菁, 曾宪涛, 等. 临床实践指南制订方法: 患者的价值观和意愿[J]. 中国循证心血管医学杂志, 2018, 10: 1153-1156, 1161. doi:  10.3969/j.issn.1674-4055.2018.10.01
    [6] Sackett D, Straus S, Richardson W, et al. Evidence-based medicine: How to practice and teach EBM, 2nd Edition[M]. Edinburgh: Churchill Livingstone, 2000.
    [7] Strauss SE. Evidence-Based Medicine: how to practice and teach EBM[M]. London: Churchill Livingstone, 2005.
    [8] Institute of Medicine. Clinical Practice Guidelines We Can Trust[M]. Washington DC: National Academies Press, 2011.
    [9] Infectious Diseases Society of America. Handbook for Clinical Practice Guidelines Development[EB/OL]. (2021-01-19)[2022-04-18]. https://www.idsociety.org/practice-guideline/clinical-practice-guidelines-development-training-and-resources/.
    [10] National Society of Genetic Counselors. NSGC Evidence-Based Clinical Practice Guideline Development Manual[EB/OL]. (2020-03-03)[2022-04-18]. https://www.nsgc.org/Policy-Research-and-Publications/Practice-Guidelines.
    [11] Minds Manual Developing Committee. Minds Manual for Guideline Development 2020 ver. 3.0[EB/OL]. (2021-03-22)[2022-04-18]. https://minds.jcqhc.or.jp/s/developer_manual.
    [12] National Institute for Health and Care Excellence. Developing NICE guidelines: the manual[EB/OL]. (2022-01-18)[2022-04-18]. https://www.nice.org.uk/process/pmg20.
    [13] Scottish Intercollegiate Guidelines Network. A guideline developer's handbook[EB/OL]. (2019-11)[2022-04-18]. https://www.sign.ac.uk/what-we-do/methodology/sign-50-a-guideline-developers-handbook/.
    [14] 赵瑞, 拜争刚, 黄崇斐. 质性研究系统评价在循证指南制定中的应用价值[J]. 中国循证医学杂志, 2016, 16: 855-859. doi:  10.7507/1672-2531.20160131
    [15] Bo Y, Fang Z, Zong Z, et al. Preferences for treatment of lobectomy in Chinese lung cancer patients: video-assisted thoracoscopic surgery or open thoracotomy?[J]. Patient Prefer Adherence, 2014, 8: 1393-1397.
    [16] Welsh P, Tiffin PA. Assessing adolescent preference in the treatment of first-episode psychosis and psychosis risk[J]. Early Interv Psychia, 2013, 8: 281-285.
    [17] Vu HT, Sayuk GS, Gupta N, et al. Patient preferences of a resect and discard paradigm[J]. Gastrointest Endosc, 2015, 82: 381-384. doi:  10.1016/j.gie.2015.01.042
    [18] Tong BC, Wallace S, Hartwig MG, et al. Patient preferences in treatment choices for early-stage lung cancer[J]. Ann Thorac Surg, 2016, 102: 1837-1844. doi:  10.1016/j.athoracsur.2016.06.031
    [19] Rid A, Wesley R, Pavlick M, et al. Patients' priorities for treatment decision making during periods of incapacity: quantitative survey[J]. Palliat Support Care, 2015, 13: 1165. doi:  10.1017/S1478951514001096
    [20] Noble S, Matzdorff A, Maraveyas A, et al. Assessing patients' anticoagulation preferences for the treatment of cancer-associated thrombosis using conjoint methodology[J]. Haematologica, 2015, 100: 1486-1492. doi:  10.3324/haematol.2015.127126
    [21] Thomson RG, Eccles MP, Steen IN, et al. A patient decision aid to support shared decision-making on anti-thrombotic treatment of patients with atrial fibrillation: randomised controlled trial[J]. Qual Saf Health Care, 2007, 16: 216-223. doi:  10.1136/qshc.2006.018481
    [22] Zhang Y, Coello PA, Brożek J, et al. Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach[J]. Health Qual Life Outcomes, 2017, 15: 52. doi:  10.1186/s12955-017-0621-0
    [23] Selva A, Sanabria AJ, Pequeño S, et al. Incorporating patients' views in guideline development: a systematic review of guidance documents[J]. J Clin Epidemiol, 2017, 88: 102-112. doi:  10.1016/j.jclinepi.2017.05.018
    [24] Blackwood J, Armstrong MJ, Schaefer C, et al. How do guideline developers identify, incorporate and report patient preferences? An international cross-sectional survey[J]. BMC Health Serv Res, 2020, 20: 458. doi:  10.1186/s12913-020-05343-x
    [25] Kung J, Miller RR, Mackowiak PA. Failure of clinical practice guidelines tomeet institute of medicine standards: Two more decades of little, if any, progress[J]. Arch Intern Med, 2012, 172: 1628-1633. doi:  10.1001/2013.jamainternmed.56
    [26] Bonardi A, Clifford CJ, Hadar N. Structured Approach Using the Systematic Review Data Repository(SRDR): Building the Evidence for Oral Health Interventions in the Population With Intellectual and Developmental Disability[J]. Eval Rev, 2017, 41: 111-129. doi:  10.1177/0193841X16664811
    [27] Boivin A, Currie K, Fervers B, et al. Patient and public involvement in clinical guidelines: international experiences and future perspectives[J]. Qual Saf Health Care, 2010, 19: e22. doi:  10.1136/qshc.2007.025700
    [28] American Society of Clinical Oncology. Methodology Manual[EB/OL]. (2021-09-09)[2022-04-18]. https://old-prod.asco.org/practice-patients/guidelines/guideline-meth-odology.
    [29] European Society of Human Reproduction and Embryology. Manual for ESHRE guideline development[EB/OL]. (2019-11-16)[2022-04-18]. https://www.eshre.eu/Guidelines-and-Legal/Guidelines/Guideline-development-process.
    [30] Nagler EV, Webster AC, Bolignano D, et al. European Renal Best Practice (ERBP) Guideline development methodology: towards the best possible guidelines[J]. Nephrol Dial Transplant, 2014, 29: 731-738. doi:  10.1093/ndt/gft407
    [31] Mohd Mustapa MF, Exton LS, Bell HK, et al. Updated guidance for writing a British Association of Dermatologists clinical guideline: the adoption of the GRADE methodology 2016[J]. Br J Dermatol, 2017, 176: 44-51. doi:  10.1111/bjd.15201
    [32] The Kidney Health Australia-Caring for Australasians with Renal Impairment. KHA-CARI Guideline Development Manual[EB/OL]. (2019-11-16)[2022-04-18]. https://www.cariguidelines.org/guideline-developers.
    [33] Qaseem A, Forland F, Macbeth F, et al. Guidelines International Network: Toward International Standards for Clinical Practice Guidelines[J]. Ann Intern Med, 2012, 156: 525-531. doi:  10.7326/0003-4819-156-7-201204030-00009
    [34] American College of Occupational and Environmental Medicine. Methodology for ACOEM's Occupational Medicine Practice Guidelines[EB/OL]. [2022-04-18]. https://acoem.org/Practice-Resources/Practice-Guidelines-Center/Guidelines-Methodology.
    [35] O'Neill J, Tabish H, Welch V, et al. Applying an equity lens to interventions: using PROGRESS ensures considera-tion of socially stratifying factors to illuminate inequities in health[J]. J Clin Epidemiol, 2014, 67: 56-64. doi:  10.1016/j.jclinepi.2013.08.005
    [36] de Wit M, Cooper C, Reginster JY. Practical guidance for patient-centred health research[J]. Lancet, 2019, 393: 1095-1096. doi:  10.1016/S0140-6736(19)30034-0
    [37] 解染, 陈耀龙, 陈昊, 等. 循证指南制定中患者价值观和偏好的研究方法[J]. 中国循证医学杂志, 2015, 15: 586-591. doi:  10.7507/1672-2531.20150097
    [38] New Zealand Guidelines Group. Handbook for the Prepara-tion of Explicit Evidenced-Based Clinical Practice Guidelines[EB/OL]. (2001-11)[2022-04-18]. https://www.health.govt.nz.
    [39] National Clinical Effectiveness Committee. Guideline Developers manual[EB/OL]. (2013-02)[2022-04-18]. https://www.gov.ie/en/collection/74f29c-national-clinical-effectiveness-committee.
    [40] International Diabetes Federation. Guide for Guidelines: A guide for clinical guideline development[EB/OL]. [2022-04-18]. https://www.idf.org/e-library/guidelines.html.
    [41] National Health and Medical Research Council. A guide to the development, implementation and evaluation of clinical practice guidelines[EB/OL]. (1998-11-16)[2022-04-18]. https://www.nhmrc.gov.au/guidelines.
    [42] Boivin A, Green J, van der Meulen J, et al. Why Consider Patients' Preferences?A Discourse Analysis of Clinical Practice Guideline Developers[J]. Med Care, 2009, 47: 908-915. doi:  10.1097/MLR.0b013e3181a81158
    [43] Lewis SZ, Diekemper R, Ornelas J, et al. Methodologies for the development of CHEST guidelines and expert panel reports[J]. Chest, 2014, 146: 182-192. doi:  10.1378/chest.14-0824
    [44] FitzGerald JD, Dalbeth N, Mikuls T, et al. 2020 American College of Rheumatology Guideline for the Management of Gout[J]. Arthritis Care Res (Hoboken), 2020, 72: 744-760. doi:  10.1002/acr.24180
    [45] Chung SA, Gorelik M, Langford CA, et al. 2021 American College of Rheumatology/Vasculitis Foundation Guideline for the Management of Polyarteritis Nodosa[J]. Arthritis Care Res (Hoboken), 2021, 73: 1061-1070. doi:  10.1002/acr.24633
    [46] Sammaritano LR, Bermas BL, Chakravarty EE, et al. 2020 American College of Rheumatology Guideline for the Management of Reproductive Health in Rheumatic and Musculoskeletal Diseases[J]. Arthritis Rheumatol, 2020, 72: 529-556. doi:  10.1002/art.41191
    [47] de Wit M, Cooper C, Tugwell P, et al. Practical guidance for engaging patients in health research, treatment guide-lines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO)[J]. Aging Clin Exp Res, 2019, 31: 905-915. doi:  10.1007/s40520-019-01193-8
    [48] Roman BR, Feingold J. Patient-centered guideline development: best practices can improve the quality and impact of guidelines[J]. Otolaryngol Head Neck Surg, 2014, 151: 530-532. doi:  10.1177/0194599814544878
    [49] van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development[J]. Health Care Anal, 2009, 17: 198-216. doi:  10.1007/s10728-008-0099-3
    [50] Goodman SM, Miller AS, Turgunbaev M, et al. Clinical Practice Guidelines: Incorporating Input From a Patient Panel[J]. Arthritis Care Res (Hoboken), 2017, 69: 1125-1130. doi:  10.1002/acr.23275
    [51] Moore A, Wu Y, Kwakkenbos L, et al. The patient engagement evaluation tool was valid for clinical practice guideline development[J]. J Clin Epidemiol, 2022, 143: 61-72. doi:  10.1016/j.jclinepi.2021.11.034
  • 加载中

Catalog

    通讯作者: 陈斌, bchen63@163.com
    • 1. 

      沈阳化工大学材料科学与工程学院 沈阳 110142

    1. 本站搜索
    2. 百度学术搜索
    3. 万方数据库搜索
    4. CNKI搜索

    Figures(1)

    Article Metrics

    Article views (253) PDF downloads(37) Cited by()
    Proportional views
    Related

    /

    DownLoad:  Full-Size Img  PowerPoint
    Return
    Return