4 August 2016
On the 12 July 2016 the APPG on Medical Research held a parliamentary drop-in, entitled ‘Can patient data revolutionise healthcare?’, to bring parliamentarians together to inform parliamentarians about the use of patient data in medical research.
3 August 2016
Last week, Lord Stern published his review of the Research Excellence Framework (REF), the system used by government to assess the quality of research in UK higher education institutions. The review examines both the REF and previous research assessment processes and makes a number of recommendations. The main audience for this review are sitting in academic ivory towers, and there have been plenty of excellent summaries written from the researcher perspective. But I think it is vital that everyone interested in research and its outcomes takes the time to understand what the review says, and what it will mean for them and their organisation. So - here's a non-academic's view of the main points.
21 July 2016
AMRC has set up a working group to help members looking at new ways of funding research. We call this “Passion Capital”.
19 July 2016
A US charity is partnering with a public company in a direct equity example of Passion Capital.
6 July 2016
Today the National Data Guardian for Health and Care, Dame Fiona Caldicott published her long-awaited “Review of Data Security, Consent and Opt-Outs”. The review includes recommendations for developing a new consent (opt-out) approach for the sharing of health information and on data security standards in NHS and care organisations.
21 June 2016
Today sees the launch of a new communication tool that aims to help people to make sense of published survival data about children’s heart surgery in the UK and Ireland. The website, Understanding Children’s Heart Surgery Outcomes, was co-designed by researchers, the charity Sense about Science, other medical charities and members of the public and patients’ families. In this blog, Joanne Thomas and Emily Jesper at Sense about Science discuss the tool, the collaborative approach taken in its development and how AMRC members can work with Sense about Science on future projects concerning complicated risk and health issues.
9 June 2016
The UK Clinical Research Collaboration (UKCRC) Tissue Directory and Coordination Centre (the Centre) has been set up to support the work of biobanks by improving researchers’ access to human tissue samples. One of the Centre's main projects is to develop an online Tissue Directory which will hold information about sample collections across the UK and make it easier for researchers to find and access samples for high quality research. In this blog, the UKCRC Tissue Directory and Coordination Centre's Project and Engagement Manager, Jessica Sims introduces the directory and discusses how health and medical research charities can help shape its future direction.
26 May 2016
With the government now acknowledging that more needs to be done for brain tumour patients and their families, Brain Tumour Research reflects on the years of campaigning, the petition that led to this change and what this package of measures proposed by the government means for families.
20 May 2016
Today is International Clinical Trials Day – where we celebrate the people who take part in trials – both as participants and researchers. Much will be written today about the great teams, and the great trials that are done. I’d like to write something a bit more personal. I’ve been involved in clinical research in one way or another for more than 20 years – so permit me a moment of hindsight, to reflect on how things have changed.
11 May 2016
Mark Terry, Clinical Research Consultant and Training Solutions Manager at Wendy Fisher Consulting discusses the implementation of HRA Approval and the impact it will have upon medical research charities.