Twelve days of Christmas By Leonora Neale, Communications Officer, AMRC Published: 24 December 2018 This year at our 32nd Annual General Meeting we decided to mix things up a bit and presented our accomplishments for the year as gifts to our wonderful member charities. On the first day of Christmas AMRC gave to me… help with all things patient data Patient data is crucial to enable researchers to prevent, diagnose and treat disease, as well as improve patient care. A huge focus for the team for the first half of the year was the launch of the national data opt-out, which allowed the public the opportunity to opt out of sharing their records for uses beyond their personal care – like research. We worked closely with Understanding Patient Data on resources to deliver this and worked with our members and others to make best use of other opportunities to do so. After some last-minute challenges the national data opt-out was successfully launched on 25 May. Triggered by a recommendation in the Life Sciences Industrial Strategy we also focused on patient data registries. We held a workshop in the summer alongside NHS Digital and the Medical Research Council to discuss best practice around registries and how charities, arm’s length bodies, government and others can work together to help charities effectively collect and link data. On the second day of Christmas AMRC gave to me… the Day in Westminster Over 30 member chief executives took part in a full day of engagement across Westminster and Whitehall, sharing the views and the voice of the medical research charity sector. 20 meetings took place with MPs, Peers, civil servants and Government Ministers around the impact of AMRC member charities, the need to ensure Brexit has no negative impact on patients and medical research, and the importance of embedding research across the NHS. As part of the day, a lunch reception in the House of Commons celebrated the innovative ways charities are using data and AI to promote healthy ageing. A keynote address from Professor Sir John Bell, author of the Life Sciences Industrial Strategy, praised the unique contribution and potential of charity-led data registries. Closing the day the new NHS England Chair Lord Prior spoke of the importance of charities in helping to deliver the long-term plan and thanked the sector for supporting its development. On the third day of Christmas AMRC gave to me… influence on Brexit The gift of Brexit keeps on giving. Sadly, there’s no receipt so we can’t return it. Earlier this year we joined forces with patient organisations across the EU and wrote a joint letter to Brexit negotiators highlighting shared UK-EU patient organisation views. As a result we had two meetings with representatives from the European Commission’s Taskforce on Article 50 over the course of the year where we emphasised that there must be no damaging impact on patients, no matter what the Brexit outcome. Over the past 6 months, as a no deal outcome and contingency planning have become an increasing focus, we have emphasised the damaging effects on patients and research. We have liaised with Government and our members regarding contingency planning to share the views of the medical research charity sector. We continued to be members of the Brexit Health Alliance, bringing the medical research charity voice together with key organisations across the healthcare and research landscape. The Alliance has been increasingly vocal in the media on the need for sufficient no deal contingency planning, with a particular focus on the NHS. On the fourth day of Christmas AMRC gave to me… spotlight reports Part of AMRC’s mission is to highlight the sector’s contribution to patient and public health, and we do this by collecting data and stories from our members and sharing that back in engaging formats. One particular format we’ve initiated over the past year and a half is our two-page spotlight reports that shine a light on how medical research charities are playing vital roles in different health areas. We’ve covered topics including child health, mental health, healthcare technology, dementia and so on. We publicise our spotlight reports on social media to spread awareness about the sector’s impact and we know, for example, that our Spotlight on drug resistant infection reached Chief Medical Officer Dame Sally Davies, and our Spotlight on healthy ageing was shared with Number 10 Downing Street. On the fifth day of Christmas AMRC gave to me… a HR benchmarking report As a membership organisation, we get many queries around relevant benchmarking data on HR matters like salary and reward. Last fall, our newly formed HR advisory group, helped us to design a survey in order to collect this data. In total, 48 charities completed the survey, which represents one third of our members. The survey was distributed to charity CEOs in April and covered a wide range of HR-related topics, including salary and reward, benefits, training, diversity and inclusion, challenges, and more. From the survey results we produced a benchmarking report and infographic, which is the first of its kind for AMRC. Our member charities can use the report to delve into the data and benchmark against similar size medical research charities to see where they stand and identify ways they can improve management of their organisations. On the sixth day of Christmas AMRC gave to me… guidance on Excess Treatment Costs changes The way in which Excess Treatment Costs (ETCs) are paid for clinical research changed on 1 October under a trial period which ends next April. In the past, we’ve heard from lots of funders about the challenges of getting ETCs paid. It was clear the system wasn’t working well. Time after time, research had been delayed – bad news for funders and worse news for patients who are waiting to be enrolled on studies. We worked alongside NIHR, HRA, NHS England and DHSC to influence and shape the new system for paying ETCs and ensured we kept our members informed of the changes. On the seventh day of Christmas AMRC gave to me… the BenevolentAI Award In partnership with BenevolentAI we launched the ‘BenevolentAI Award’. The award winners Parkinson’s UK and The Cure Parkinson’s Trust were given access to BenevolentAI’s artificial intelligence platform to help solve critical research challenges they were facing. Following the success of BenevolentAI’s work with the previous winners we are running the award for a second year. All the timings, eligibility criteria and judging information is available on our website and we very much encourage our members to apply. We particularly welcome collaborations between charities. On the eighth day of Christmas AMRC gave to me… improved membership engagement It all started with a completely new website which improved navigation to important resources for our members and has a fresher look. The next step was to improve our Customer Relationship Management (CRM) system by redesigning and customising Salesforce, our main tool for managing AMRC’s contact database and storing interactions with our members. This has helped us shape a picture of how we interact with our members and understand their needs, which is crucial for further member engagement. As if this wasn’t enough digital transformation, we also decided to take on a new IT provider, who helped us move to the Cloud. AMRC is officially cloud-based since the end of November – this means that our data is no longer stored on a local server but is stored and managed by remote servers hosted on the internet. Now that AMRC is cloud based, it’s easier for us to deliver the best possible service to our members, as we can work from any place we want. On the ninth day of Christmas AMRC gave to me… networks Over 566 people from 108 member charities participated in our 11 working groups/networks over the last year. Throughout the year our networks have provided individual support for a wide range of staff within our member charities including those working in policy, research, HR, communications, finance, and digital. Our networks helped to increase awareness of and preparedness for cross-cutting issues, share benchmarks, identify relevant resources and events to attend, spark new ideas, and facilitate introductions and joint working. They have also helped us to develop four guides (two digital, one HR, and one IP) and we’re sure there will be more to come. On the tenth day of Christmas AMRC gave to me… guidance on Intellectual Property One of our roles at AMRC is to ensure that all our members are equipped to keep up with the shifting sands of change in today’s research landscape, to help them maximise patient benefit. In 1997, we developed guidance on Intellectual Property (IP) terms and conditions to help our members navigate the complexities of IP. Twenty years later, our members told us that this guidance was getting a tad bit out of date. So, working with a group of interested members, we explored current practice and went about revising it. In September we published our updated guidance which is for our members to adopt as they see fit and it is understood that not all members will adopt it entirely. We also created an IP advisory group to take forward some of the issues linked to managing intellectual property and changing roles of universities and charity funders that were raised in the consultation. On the eleventh day of Christmas AMRC gave to me… the Open Research platform We worked in collaboration with 24 member charities and F1000 to develop a joint publication platform, AMRC Open Research. All too often the results of research are published slowly, held behind paywalls, or never published at all. By launching this platform the participating charities are helping to ensure that all results of the research they fund can be rapidly and widely shared to limit duplication of effort, accelerate the progress of research and most importantly bring benefits to patients sooner. The platform is just about to open with its first papers and will be open for other funders to join. On the twelfth day of Christmas AMRC gave to me… the Researchfish plan Since 2013, we have worked with our members and the Medical Research Council (MRC) to enable our members to understand more about the impact their research has, and to do this in the context of other UK research funders. Last year, we moved into a new phase of the ‘Researchfish’ project where charities who funded less than 5 million in 2016 were able to join a bulk-deal. We were keen that charities start to pay for this service, and MRC also wanted to support the initiative, so we came up with a sliding scale, where MRC pays most in the first years, and charities pay an increasing contribution. The AMRC sector impact report will be out next year – so you can see how the project allows us to show the great work that our members do. We wish you a Merry Christmas and a Happy New Year! So, that’s our twelve gifts of Christmas, all that’s left is to wish you a very Merry Christmas and a Happy New Year!