A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

News snippets

This is a short set of items for information or interest, providing a short briefing, plus a link to the fuller news page:

AllTrials Campaign update, 12 October 2016

AllTrials have just published a roadmap to transparency to suggest what organisations like yours can do to change things in their sector, and to highlight some related initiatives that are already underway. It is designed to show, clearly and simply, what campaign supporters can do to make the biggest impact. 

This draft roadmap is based on conversations with hundreds of the individuals and organisations involved in the campaign around the world. We hope it will spark more conversations. It is a live document that we will continue to update with new initiatives and recommendations.

Please share it with your colleagues and let AllTrials colleagues know how they could improve this working document, and please do tell them if your organisation is already doing something that we should include among our examples.
You can share your thoughts and ideas by emailing tbruckner@senseaboutscience.org

Emergency Information Service – an exploratory event – Thursday, 20 October, Glasgow:
The ALLIANCE are hosting a discussion event or exploratory’ around potential services that allow a person to give emergency services access to their vital medical information at a time of incapacity – such as respiratory emergencies, heart attacks, stroke, epilepsy etc.   

There are many services of this kind – including Meditexts – that allow ambulance crews, police or members of the public text a code found on the person and receive tailored information on such things as allergies, diagnosis, emergency contacts, carers etc. So far these have been developed by social enterprises and community interest companies. We would like to bring together charities, the emergency services and patient groups to explore various aspects of this type of service.

Discussions would centre on:

  •          Is this something that would be useful in principle?
  •          Is there a need for this type service among people with long term conditions and their carers?
  •          Is there a need for this type of service in the emergency services?
  •          What are the potential issues with this sort of service?
  •          How would this service best be delivered?

This exploratory will be quite informal and flexible in terms of where it goes and what it involves. There will also be no compulsion to join in with further events that may come out of it – and will not require any specific commitments, organisational or otherwise. We are simply looking for views and opinions. 

You can register for the event here: https://www.eventbrite.co.uk/e/emergency-information-service-an-exploratory-event-registration-28186995061

New Approaches to Anonymisation – Monday, 5 December, Cambridge:
This workshop will highlight new approaches to anonymisation and brings together leading experts, as well as data users and ‘data holders’ with the aim of disseminating state-of-the-art techniques and approaches from the INI research programme.

The programme of talks will include presentations on a variety of areas including big data anonymisation,  penetration testing, synthetic data and zone design methods. It will also feature a session on end user perspectives which will include short talks from data holders in the transport, telecoms, finance, energy and health areas. See the web page for further details.

Engaging People in Data Privacy – Tuesday, 6 December, Cambridge:
The primary aim of this workshop will be to highlight new approaches to informing and engaging the public to be functional ‘digital citizens’ and will showcase research and practice relevant to the area. It will explore new ways in which data subjects can take an active part in how their data are shared. An interdisciplinary blend of science and technology, social policy and psychology legal analysis will be presented.

Presentations and discussion will explore how people think about privacy and how this interacts with the use of personal data. They will investigate the mechanisms which need to be implemented to improve privacy of data and how the Big Data community can potentially help to address such issues. There will also be an end user perspectives session which will featuring talks from organisations in the retail, health, personal finance and security areas. See the web page for further details.


United Nations calls for clinical trial transparency:

Some big news from AllTrials: the United Nations yesterday called on governments worldwide to pass legislation requiring clinical trials to be registered, and their methods and results to be fully reported.

Read what the UN said here.

In effect, the world’s largest intergovernmental organisation has just endorsed the aims of the AllTrials campaign, after 4 years of tens of thousands of people and 700 organisations calling for this, that the UN has joined the call. It’s fantastic news for patients and doctors worldwide.

But the UN report’s words, while great and coming from the top level of government discussion, are only words. We need to see action. Over the coming days and weeks, expect to see a gearing up of the global AllTrials campaign to ensure policy makers know we all want them to act.

Google Deepmind live steam of patient engagement event:

An engagement event organised by DeepMind, run on 20th September 2016 at Google's London HQ. https://deepmind.com/applied/deepmind-health/patients/