Last updated: October 2019

Purpose of this policy

The Association of Medical Research Charities (“AMRC”, “we” or “us”) collects and holds information about the research our members fund (a member in this policy may be referred to as “you”). AMRC produces aggregate information about the research our members fund to influence the research and policy landscape and future developments.

This policy codifies AMRC’s current practice on research and grants data collection and usage so that it is clear for existing and new members.

Background

This policy sets out what research data AMRC collects, the principles under which this information is shared and how members approve to this sharing. This policy should be read in conjunction with AMRC’s privacy notice, which outlines how AMRC treats all personal data.

This policy does not cover the basic information about our members that we publish on our website in the member directory. These details were provided to us by all members at the time of membership application or during a past annual data collection. To update your charity’s member directory information please contact us anytime at [email protected].

If you have opted into the Researchfish, Dimensions, UK Health Research Analysis and/or AMRC Open Research data sharing initiatives, then the use of your data will be subject to the applicable terms of your participation in such initiatives.

Is data sharing mandatory?

AMRC relies on your data to demonstrate the vital role our sector plays in the UK life sciences and economy. It is therefore mandatory for members to share research and grant information with AMRC as one of our membership requirements. Members who do not follow this policy may be asked to leave the AMRC.

The principles

The principles of this policy are as follows:

  • AMRC member data is valuable and AMRC uses it to support the aims of the sector.
  • AMRC publishes aggregated statistics derived from member data in accordance with this policy.
  • AMRC will not publish research grants or expenditure data that identifies a charity without that charity's prior consent.
  • AMRC treats any personal data collected under the scope of this policy according to the General Data Protection Regulation as further detailed in our privacy notice.

What data are collected?

We request research and grants data at the time of membership application and annually, which includes information such as the items listed below. Copies of the most recent forms can be found here.

  1. Research expenditure
  • Charity name
  • Spending on research in the UK
  • Financial year
  • Are these from audited accounts?
  • Spending on research overseas
  • Spending on UK capital projects
  • Spending on overseas capital projects
  • Brief description of capital projects
  • Spending on other non-medical research charitable activities (e.g. welfare, support, care, education, information)
  • Total charitable expenditure
  • Estimated spending on medical research in the UK for the next financial year
  • Approval of publication of the charity’s current and historical research expenditure figures on the AMRC website
  • Approval of by either the formal representative, treasurer, financial director or chief executive
  • Contact details for subscription invoicing
  1. Individual grant information
  • Award reference number
  • Award title
  • Award start date
  • Award end date
  • Award value
  • Is this grant co-funded by another organisation?
  • Co-funding organisation(s)
  • Total award amount including co-funders' contributions
  • Host Institution
  • PI First Name
  • PI Surname
  • Award abstract
  • Award summary
  • Researchfish reference number
  • AMRC grant type (select from grant type list)
  • Does this award use animals?
  • If yes which animal species? (select from animals list)
  • If yes are any of the animals genetically modified?
  • Organisational code 1, 2, 3 and 4
  • Member comments

How are the data used?

When undertaking and publishing our research analyses, for example in our annual sector infographic and spotlight reports, we always ensure that the data is reported in aggregate so that individual member charities and people are not identified. We do not share member data with other organisations unless you have given us permission to do so, or we are otherwise entitled to or required to do so. If an individual person or charity is identified, for example in case studies of members’ research activities, we always ask permission and provide the wording we plan to use before publishing this work.

We publish research expenditure figures (current and historical) of AMRC members in an interactive dashboard on our website to maximise use of this data. Inclusion of identified data is voluntary and we obtain this permission during our annual data collection on the research expenditure form.

How is the data stored and for how long?

We store member data securely on a cloud server. The data is held indefinitely to allow for retrospective analysis.

Requesting new items of data

We recognise that producing data is time-consuming, so we will only request data that we intend to use. We may ask for new information on occasion, which will be treated in accordance with this policy. Periodically, we may review the data we collect with a data advisory group made up of our members to ensure that it is the minimum we need to allow us to support our members and represent the sector.

Your obligations

You are responsible for ensuring that all information submitted to AMRC is done so lawfully. You should ensure that your privacy notice and guidance to research grant applicants clearly explains how research and grant information, including personal data, may be used by and disclosed to third parties such as AMRC.

Privacy

This policy should be read in conjunction with AMRC’s privacy notice which outlines how AMRC treats all personal data.

Additional information

If you have further questions about this policy, then please contact us at [email protected].

Status of this policy

The original policy was developed in 2013 and has been updated to make clearer what data is collected and how it is used. This policy was last reviewed and updated in October 2019.