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@ARTICLE{Depner:283030,
author = {Depner, Frank Lucas and Russek, Martin and Röthlein,
Christoph and Becker, Cornelia and Peltner, Jonas and
Pfeifer, Kerstin and Reviers, Evy and De Valck, Dirk and
Wicherski, Julia and Hartikainen, Sirpa and Tolppanen,
Anna-Maija and Haenisch, Britta},
title = {{K}ey {S}takeholders' {K}nowledge, {O}pinions, and
{I}nterests on {R}eal-{W}orld {E}vidence in the {R}egulatory
{P}rocess-{R}esults of an {EU}-{W}ide {S}urvey.},
journal = {Clinical and translational science},
volume = {18},
number = {12},
issn = {1752-8054},
address = {Oxford},
publisher = {Wiley-Blackwell},
reportid = {DZNE-2025-01442},
pages = {e70454},
year = {2025},
abstract = {Real-world data (RWD) and real-world evidence (RWE) are
increasingly gaining attention in supporting drug regulatory
decision making. This study assessed knowledge, opinions,
and usage patterns of key stakeholders regarding the status
of RWD/RWE and AI implementation in health technology
assessment (HTA) and drug regulation and aimed to identify
the primary obstacles hindering adoption of these
technologies. Four surveys tailored to different
stakeholders were created and disseminated online to the
respective target groups, including I) regulatory
authorities, HTA bodies, and the pharmaceutical industry,
II) academia, III) payers, and IV) patients and physicians.
The responses were analyzed using descriptive statistics or
qualitative content analysis with inductive coding. The
survey was active from May 6, 2024 to June 30, 2024.
Altogether, 221 respondents participated in the survey.
Among respondents from regulatory/HTA authorities or
industry, $75.4\%$ viewed RWD/RWE as important for future
decision making. Respondents from this group already using
RWD (n = 56) most frequently reported obstacles regarding
data quality $(89.3\%),$ data access $(62.5\%),$ and
data-coding standardization $(57.1\%).$ Patients and
physicians predominantly had positive expectations about the
use of RWD/RWE, and $94.3\%$ indicated willingness to share
healthcare data for research, but all respondents also
expressed concerns, with data privacy being most frequently
mentioned $(75.5\%).$ The results show that although
stakeholders are optimistic about RWD/RWE implementation
into regulatory practice, our survey suggests that
successful implementation may benefit from further
development in several areas, including guideline
harmonization, RWD infrastructure optimization and
accessibility, and professional education.},
keywords = {Humans / Technology Assessment, Biomedical: methods /
Technology Assessment, Biomedical: legislation $\&$
jurisprudence / Surveys and Questionnaires: statistics $\&$
numerical data / Stakeholder Participation / Health
Knowledge, Attitudes, Practice / Male / Female / Decision
Making / Adult / Middle Aged / European Union / RWD (Other)
/ RWE (Other) / patients (Other) / stakeholders (Other) /
survey (Other)},
cin = {AG Hänisch},
ddc = {610},
cid = {I:(DE-2719)1013010},
pnm = {354 - Disease Prevention and Healthy Aging (POF4-354)},
pid = {G:(DE-HGF)POF4-354},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:41420643},
pmc = {pmc:PMC12717853},
doi = {10.1111/cts.70454},
url = {https://pub.dzne.de/record/283030},
}