Improving the Quality of Informed Consent in Clinical Research with Information Technology

被引:4
|
作者
Taber, Celia [1 ]
Warren, Jim [2 ]
Day, Karen [1 ]
机构
[1] Univ Auckland, Sch Populat Hlth, Auckland 1142, New Zealand
[2] Univ Auckland, Dept Comp Sci, Auckland 1142, New Zealand
来源
PROMISE OF NEW TECHNOLOGIES IN AN AGE OF NEW HEALTH CHALLENGES | 2016年 / 231卷
关键词
Clinical research; human subject research; informed consent; information technology; multimedia; social media; VIDEO;
D O I
10.3233/978-1-61499-712-2-135
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
The clinical research industry has yet to fully embrace information technology ( IT) for informed consent purposes, even though it is used indispensably in our everyday lives and in other areas of clinical research and healthcare. This paper presents findings of a meta-narrative literature review to discuss the potential for IT to improve the quality of clinical research informed consent. The review reveals three main rationales for including IT in research consent. First, in the current context consent documents frequently fail to be effective decision aids for patients, and the lack of patient centricity in the process. Second, social media provides opportunities for patients to consult with a broader community during research consent to seek broader support, and potential to participate in creating a more patient centric process. Third, multimedia tools provide opportunities for improved patient education, engagement and decision making during research consent. IT offers opportunities to achieve more meaningful research consent, but more research is needed to create an evidence base, policies and economic analyses on the return on investment of using IT in the process.
引用
收藏
页码:135 / 142
页数:8
相关论文
共 50 条
  • [41] Gender and Informed Consent in Clinical Research: Beyond Ethical Challenges
    Persampieri, Loredana
    BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, 2019, (01): : 65 - 87
  • [42] The decision dynamics of clinical research - The context and process of informed consent
    Kuczewski, MG
    Marshall, P
    MEDICAL CARE, 2002, 40 (09) : 45 - 54
  • [43] Role of information leaflets in improving the practice of informed consent for patients undergoing septoplasty
    Winterton, R. I. S.
    Alaani, A.
    Loke, D.
    Bem, C.
    JOURNAL OF LARYNGOLOGY AND OTOLOGY, 2007, 121 (02): : 134 - 137
  • [44] Improving the informed consent process for surgery
    Kondziolka, Douglas S.
    Pirris, Stephen M.
    Lunsford, L. Dade
    NEUROSURGERY, 2006, 58 (06) : 1184 - 1189
  • [45] Impediments to obtaining informed consent for clinical research in trauma patients
    Dutton, Richard P.
    Stansbury, Lynn G.
    Hemlock, Bethany
    Hess, John R.
    Scalea, Thomas M.
    JOURNAL OF TRAUMA-INJURY INFECTION AND CRITICAL CARE, 2008, 64 (04): : 1106 - 1112
  • [46] Quality of information transfer for informed consent:: an experimental study in 21 patients
    Ghrea, M
    Dumontier, C
    Sautet, A
    Hervé, C
    REVUE DE CHIRURGIE ORTHOPEDIQUE ET REPARATRICE DE L APPAREIL MOTEUR, 2006, 92 (01): : 7 - 18
  • [47] Enhancement of informed consent quality
    Gomez Ramos, Maria Jesus
    Gonzalez Valverde, Francisco Miguel
    ACTA BIOETHICA, 2012, 18 (02): : 247 - 256
  • [48] Relevant Information and Informed Consent in Research: In Defense of the Subjective Standard of Disclosure
    Dranseika, Vilius
    Piasecki, Jan
    Waligora, Marcin
    SCIENCE AND ENGINEERING ETHICS, 2017, 23 (01) : 215 - 225
  • [49] What information and the extent of information research participants need in informed consent forms: a multi-country survey
    Karbwang, Juntra
    Koonrungsesomboon, Nut
    Torres, Cristina E.
    Jimenez, Edlyn B.
    Kaur, Gurpreet
    Mathur, Roli
    Sholikhah, Eti N.
    Wanigatunge, Chandanie
    Wong, Chih-Shung
    Yimtae, Kwanchanok
    Malek, Murnilina Abdul
    Fouzi, Liyana Ahamad
    Ali, Aisyah
    Chan, Beng Z.
    Chandratilake, Madawa
    Chiew, Shoen C.
    Chin, Melvyn Y. C.
    Gamage, Manori
    Gitek, Irene
    Hakimi, Mohammad
    Hussin, Narwani
    Jamil, Mohd F. A.
    Janarsan, Pavithra
    Julia, Madarina
    Kanungo, Suman
    Karunanayake, Panduka
    Kollanthavelu, Sattian
    Kong, Kian K.
    Kueh, Bing-Ling
    Kulkarni, Ragini
    Kumaran, Paul P.
    Kumarasiri, Ranjith
    Lim, Wei H.
    Lim, Xin J.
    Mahmud, Fatihah
    Mantaring, Jacinto B. V., III
    Ali, Siti M. Md
    Noor, Nurain Mohd
    Muhunthan, Kopalasuntharam
    Nagandran, Elanngovan
    Noor, Maisarah
    Ooi, Kim H.
    Pradeepan, Jebananthy A.
    Sadewa, Ahmad H.
    Samaranayake, Nilakshi
    Ranganathan, Shalini Sri
    Subasingha, Wasanthi
    Subramaniam, Sivasangari
    Sulaiman, Nadirah
    Tay, Ju F.
    BMC MEDICAL ETHICS, 2018, 19
  • [50] Redesigning Informed Consent Tools for Specific Research
    Wright, David
    TECHNICAL COMMUNICATION QUARTERLY, 2012, 21 (02) : 145 - 167