Jane Kaye

Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

J Viberg Johansson, N Shah, E Haraldsdóttir, HB Bentzen, S Coy, J Kaye, D Mascalzoni, J Veldwijk

Journal article  |  2021  |  Technology in Society

Background: Discrete Choice Experiment (DCE) is a well-established technique to elicit individual preferences, but it has rarely b..

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Jennifer Viberg Johansson, Heidi Beate Bentzen, Nisha Shah, Eik Haraldsdottir, Guobjorg Andrea Jonsdottir, Jane Kaye, Deborah Mascalzoni, Jorien Veldwijk

Journal article  |  2021  |  JMIR MEDICAL INFORMATICS

Background: Digital technological development in the last 20 years has led to significant growth in digital collection, use, and s..

Consent

Jane Kaye, Megan Prictor

Book Chapter  |  2021

The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project.

Nao Hamakawa, Atsushi Kogetsu, Moeko Isono, Chisato Yamasaki, Shirou Manabe, Toshihiro Takeda, Kazumasa Iwamoto, Tomoya Kubota, Joe Barrett, Nathanael Gray, Alison Turner, Harriet Teare, Yukie Imamura, Beverley Anne Yamamoto, Jane Kaye, Michihiro Hide, Masanori P Takahashi, Yasushi Matsumura, Muhammad Kassim Javaid, Kazuto Kato

Journal article  |  2021  |  Res Involv Engagem

BACKGROUND: The role of patients in medical research is changing, as more emphasis is being placed on patient involvement, and pat..

Processes Underlying Glycemic Deterioration in Type 2 Diabetes: An IMI DIRECT Study

Roberto Bizzotto, Christopher Jennison, Angus G Jones, Azra Kurbasic, Andrea Tura, Gwen Kennedy, Jimmy D Bell, E Louise Thomas, Gary Frost, Rebeca Eriksen, Robert W Koivula, Soren Brage, Jane Kaye, Andrew T Hattersley, Alison Heggie, Donna McEvoy, Leen M 't Hart, Joline W Beulens, Petra Elders, Petra B Musholt, et al.

Journal article  |  2021  |  DIABETES CARE

OBJECTIVE: We investigated the processes underlying glycemic deterioration in type 2 diabetes (T2D). RESEARCH DESIGN AND METHODS: ..

'CTRL': an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research

Matilda A Haas, Harriet Teare, Megan Prictor, Gabi Ceregra, Miranda E Vidgen, David Bunker, Jane Kaye, Tiffany Boughtwood

Journal article  |  2021  |  EUROPEAN JOURNAL OF HUMAN GENETICS

The complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired b..

Toward better governance of human genomic data

Kieran C O'Doherty, Mahsa Shabani, Edward S Dove, Heidi Beate Bentzen, Pascal Borry, Michael M Burgess, Don Chalmers, Jantina De Vries, Lisa Eckstein, Stephanie M Fullerton, Eric Juengst, Kazuto Kato, Jane Kaye, Bartha Maria Knoppers, Barbara A Koenig, Spero M Manson, Kimberlyn M McGrail, Amy L McGuire, Eric M Meslin, Dianne Nicol, et al.

Journal article  |  2021  |  NATURE GENETICS

PNS242 Identifying the Public's Preferences for Sharing Health DATA Digitally

J Viberg Johansson, D Mascalzoni, J Kaye, N Shah, GA Jónsdóttir, E Haraldsdóttir, J Veldwijk

Journal article  |  2020  |  Value in Health

Reflections on dynamic consent in biomedical research: the story so far

Harriet JA Teare, Megan Prictor, Jane Kaye

Journal article  |  2020  |  EUROPEAN JOURNAL OF HUMAN GENETICS

Dynamic consent (DC) was originally developed in response to challenges to the informed consent process presented by participants ..

Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe

Michael Morrison, Miranda Mourby, Heather Gowans, Sarah Coy, Jane Kaye

Journal article  |  2020  |  LIFE SCIENCES SOCIETY AND POLICY

Responsible Research and Innovation ('RRI') is a cross-cutting priority for scientific research in the European Union and beyond. ..