NCT06018233

Brief Summary

Technology and data can bring opportunities for increased societal benefits for example regarding health, environmental sustainability and energy. There can be clashes between regimes which aim to bring these benefits about, and the outcomes which are dictated if one looks to only laws and regimes with a focus on technology and data, notably information and intellectual property (IP) laws. A recent example of a clash was seen between IP, human rights and health in relation to COVID-19. This study is part of a project exploring the place and impact of clashes on the operation of regimes and possible new potential forms of governance, structure and regime creation which could be developed. The project will explore the establishment and operation of the Scottish Public Benefit and Privacy Panel for Health and Social Care. It will also explore approaches to data and technology in the UK oil and gas licensing framework; a developing new international regime in relation to marine biodiversity, benefit sharing and technology transfer; and approaches in Scotland and in England to private or public ownership and licensing of soil and environmental data, including those funded by research councils. It may also include the European data strategy and the development of the pan African free trade agreement and its approach to IP. Some of these regimes engage directly with laws relating to data and technology, notably private rights, information control and IP; some do not. The study will interrogate, through qualitative research with key figures who and are involved, the drivers for structural approaches being taken; levels of engagement in creating and operating new regimes with regime and laws focussed on data and technology; and the possible impact of data and technology regimes on the new regimes' wider goals.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
35

participants targeted

Target at P25-P50 for all trials

Timeline
Completed

Started Oct 2023

Shorter than P25 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

August 11, 2023

Completed
19 days until next milestone

First Posted

Study publicly available on registry

August 30, 2023

Completed
1 month until next milestone

Study Start

First participant enrolled

October 3, 2023

Completed
12 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 30, 2024

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

September 30, 2024

Completed
Last Updated

December 24, 2024

Status Verified

December 1, 2024

Enrollment Period

12 months

First QC Date

August 11, 2023

Last Update Submit

December 18, 2024

Conditions

Keywords

GovernanceTechnologyDataIntersectionIntellectual PropertyRegulation

Outcome Measures

Primary Outcomes (1)

  • New approaches to regime creation

    Interviews carried out, transcribed and shared with individual participants. Thereafter, by researcher, analysed, and considered although theoretical research. Proposals developed for more holistic and pluralist engagement and book written

    2 years 6 months project as whole. Interview phase as a whole, 4 months, each interview 1 hour, possible follow up.

Study Arms (1)

People involved with creating and operating regimes which address key societal challenges.

Qualitative semi-structured interviews to explore approaches taken to regimes, including one case study group regarding the Public Benefit and Privacy Panel in Scotland. No use of drugs and no personal health related interventions. Same approaches taken to 3 other case study groups which do not involve health.

Other: New proposal for regime creation

Interventions

Interviews and building of proposals in the light of the information obtained and desk based research

People involved with creating and operating regimes which address key societal challenges.

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Group 1 - People involved in creation and operation of Scottish panel to grant access to data for re-use in health and social care research (Public Benefit and Privacy Panel for Health and Social Care of NHS Scotland). Group 2 - People involved in creation and operation of approaches to data and technology in a UK framework based on the grant of an oil and gas licence. Group 3 - People involved in developing new international regime in relation to marine biodiversity, benefit sharing and technology transfer. Group 4 - People involved in creation and operation of different approaches in Scotland and in England to private or public ownership and licensing of soil and environmental data, including those funded by a research council.

You may qualify if:

  • involved in the development or operation of one of the relevant governance and regime structures listed.
  • able to communicate in English
  • no communication needs.
  • able to give informed consent.

You may not qualify if:

  • not involved in the development or operation of one of the relevant governance and regime structures listed.
  • unable to communicate in English
  • has communication needs
  • is unable to give informed consent.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Aberdeen

Aberdeen, Scotland, AB24, United Kingdom

Location

Study Officials

  • Miss King

    University of Aberdeen and NHS Grampian

    STUDY DIRECTOR

Study Design

Study Type
observational
Observational Model
OTHER
Time Perspective
RETROSPECTIVE
Sponsor Type
OTHER
Responsible Party
SPONSOR

Study Record Dates

First Submitted

August 11, 2023

First Posted

August 30, 2023

Study Start

October 3, 2023

Primary Completion

September 30, 2024

Study Completion

September 30, 2024

Last Updated

December 24, 2024

Record last verified: 2024-12

Data Sharing

IPD Sharing
Will not share

Locations