Medical research charities and COVID-19: AMRC’s response and key guidance This is a live blog which will continue to be updated as further information and guidance becomes available. The impact of the COVID-19 pandemic is being felt across the breadth of our health system and beyond. We know that this is a deeply challenging time for our members, patients and the public. It’s a fast-changing situation and the intention of this blog is to keep AMRC members up to date on what’s happening across the health and medical research sector, including how we’re working to provide support and signposts to key guidance as it’s issued. Throughout this period AMRC will: support our members with an online forum to share information and experiences; signpost and collate our members’ guidance on the impact to the research they fund; and act as a channel of communication to share sector views with government and other key bodies. Supporting our members AMRC have identified three main ways that COVID-19 is affecting our members: impact on the research that charities fund; impact on the communities represented and supported by many charities; and impact on the ways that charities work. We've been working hard over the last two months to support our members with these issues. Online forum On 13 March we launched an online forum for our members to share information, questions and concerns about the impact of COVID-19 on research, patients and organisations. Over 200 individuals have joined the forum. If you would like to join, please sign up here. CEO statement On 20 March we published a statement from our CEO highlighting that many of our member charities were having to make a difficult decision to suspend clinical trials. We asked that clinical trial decisions be made with the impact on patients in mind and that they be proportionate, and communicated transparently and sensitively. Survey and briefing At the end of March, we were asked by government to provide evidence to demonstrate the impact of COVID-19 on medical research charities. On 27 March we circulated a survey to our 140+ members to collect this information. The results were used to develop a briefing. It outlines the significant challenges the sector is facing and our asks of government. It was circulated to members, key stakeholders and media on 6 April. Letter to the Chancellor of the Exchequer On 8 April, the Chancellor announced a £750 million support package for frontline charities. The following day, we sent a letter to the Chancellor to highlight that an unintended consequence of the announcement may be to falsely reassure the public and others that the charity sector as a whole is being financially supported. We called for targeted and tailored emergency funding to be made available to AMRC member charities to ensure the continuity of charity-funded research now and in the future. Advertising member volunteer opportunities for furloughed staff Most of our member charities are having to furlough skilled and experienced staff. Many of these staff are unable to do any work for their own charity but would like to volunteer for other AMRC charities. To help with this, from 13 April, we started advertising member charity volunteer opportunities in our weekly mailing. For further information visit our vacancies page. Sector statement on job retention scheme On 22 April, AMRC published a statement on the government's job retention scheme and charity-funded university researchers. On 15 May this statement was updated to further clarify our position. Regular COVID-19 virtual meetings with member CEOs Our CEO holds regular virtual meetings with member CEOs to update them about our COVID-19 activities, asks and next steps and to take on board their concerns. Twitter We want to support our members in these difficult times by spreading positivity where we can. Our twitter page @AMRC will continue to provide key information and member updates but we’ll also be sharing light-hearted posts to try to keep us all upbeat! Our events This is a very strange time for us all and we want to make sure we are supporting our members in the best way possible. After the success of our first ever virtual workshop in March, we are hosting more online events that equip you with the tools, knowledge and support you need right now. Find out more here. ‘One stop shop’ for health and medical research sector guidance As the impact of COVID-19 becomes more understood, key organisations and sector bodies are publishing statements and guidance. We’ve collated the most important information below to help our members keep up to date on what they need to know. We regularly refresh this list to ensure it reflects the latest guidance. Organisation Guidance Relevance for medical research charities The UK Clinical Academic Training Forum (CATF) Updated 29 May 2020 Principles and practical approaches to support clinical academics returning from the Covid-19 frontline CATF has developed guidance with input from key stakeholders including AMRC, CRUK and Wellcome to support returning clinical academics from the COVID-19 front line; including their supervisors and postgraduate deaneries. Association of Research Managers and Administrators Updated 13 May 2020 Briefing Note - The Coronavirus Job Retention Scheme and Research This briefing note brings together key questions, key resources, and a summary of relevant information about the Coronavirus Job Retention Scheme and what it means for research and research management staff. Charity Tax Group Updated 15 May 2020 Coronavirus information hub for charity tax and finance professionals This page includes information and updates for charities about the Job Retention Scheme, Local Authority Discretionary Grants Fund, the Gift Aid Small Donations scheme, Business Rates Reliefs and Grant Funds, and other charity-relevant financial news and developments. Department of Health and Social Care/ National Institute for Health Research Updated 26 March 2020 Statement on the new national process to prioritise COVID-19 research NIHR guidance for mitigating the coronavirus pandemic can be found here, including how to get priority funding for COVID-19 urgent research, and the impact of COVID-19 on research funded or supported by NIHR. HM Revenue & Customs Updated 29 May 2020 Check which employees you can put on furlough to use the Coronavirus Job Retention Scheme This guidance explains which employees you can put on furlough and claim for through the Coronavirus Job Retention Scheme. Health Research Authority Published 6 April 2020 COVID-19 research All Health Research Authority COVID-19 research guidance including guidance for undertaking research, using patient data and applying for fast-track approval. Information Commissioner's Office Data protection and coronavirus information hub Includes homeworking situations and notifying staff if a colleague has contracted the virus. Medicines and Healthcare products Regulatory Agency Published 12 March 2020 Advice for management of clinical trials in relation to Coronavirus Regulation of clinical trials when impacted by COVID including protocol and standard operating procedure deviations. Office for Life Sciences Updated 19 May 2020 Working safely during coronavirus (COVID-19) Guidance to help employers, employees and the self-employed understand how to work safely during the coronavirus pandemic. Royal College of Physicians Published 19 March 2020 Clinical academics and COVID-19 Joint statement from research funders for clinical academics. The Charity Commission Updated 7 April 2020 Coronavirus guidance for the charity sector Guidance to help charity trustees to determine what assistance with COVID-19 can be provided and what the long term implications of such action could be. University College London Updated 20 May 2020 COVID-19 - Impact on Research Funding Provides links to UCL’s major research funder’s guidance on coronavirus and advice for researchers. UK Research and Innovation UKRI Coronavirus Hub Resources to inform the research community on the current crisis, including: a page on the science behind coronavirus; UKRI’s approach including brief information on grant costs; information on UKRI funding for their doctoral students. A number of patients are being identified by clinicians as no longer needing to be on the clinically extremely vulnerable list. Clinicians have the authority to remove patients from the shielded list if, after review, they feel that he/she is not ‘clinically extremely vulnerable’. On 10 April, NHS England wrote to GPs requesting that they review the list for accuracy and identify any additional patients who they feel should be included. The decision to remove a patient from the list should always be a clinical decision. Clinicians have been advised to discuss these decisions with their patients and mark their decision on the IT system. Where some of these people have been receiving direct support from Government, DHSC has been following up via text to make it clear that they can still access forms of support including the NHS Volunteers network, and will retain their supermarket priority delivery slots. If a patient has received a text and is unsure of what it means for them, we advise that they contact their clinician to discuss. To help inform its future lobbying plans, Charity Tax Group is asking charities to complete a short survey (10 questions and takes on average 5 minutes to complete) on the extent to which they have made use of Government COVID-19 support measures. The responses received so far (almost 100) have been very helpful and have confirmed the value of the Job Retention Scheme, in particular. Health Data Research UK is playing its part in tackling COVID-19: accelerating safe access to UK-wide health data relevant to COVID-19, co-ordinating and connecting national science-driven research efforts related to COVID-19, working to coordinate data science driven research efforts across the UK, and connect teams working on similar or complementary research and innovation, to avoid duplication and synergise efforts. The Department of Health and Social Care has added new restrictions to the export of more than 80 medicines. This will ensure that there's an uninterrupted supply of medicines for NHS hospitals treating coronavirus patients. The Health Research Authority has introduced an additional step in its normal transparency arrangements, to ensure that information about COVID-19 related research is made public as quickly as possible. Summary information about each COVID-19 research project is on their website. There are 11 select committees accepting written evidence for inquiries relating to COVID-19 and its impact, including one on science and research. The Coalition for Epidemic Preparedness Innovations has launched an Expression of Interest for those able to serve as sponsors or provide operational trial support for clinical trials involving COVID-19 candidate vaccines. Legal aspects of COVID-19 Simmons & Simmons, an international law firm, have a dedicated section on their website with links to resources about the legal aspects of COVID-19. COVID-19: risks and opportunities Remote working - signing legal documents using e-signatures Government websites for country-specific COVID-19 guidance The Coronavirus outbreak challenge Coronavirus – impact on business contracts Construction and the Coronavirus Trusting the internet: An overview of anti-disinformation laws Coronavirus (COVID-19) - the insurance issues Managing Insolvency Risk and Financial Reporting Coronavirus - impact on tax COVID-19 and its potential impact on trade finance Other publications How are medical research charities helping? Medical research charities are using their expertise and resources to support the national response to the crisis however they can. Anthony Nolan has loaned its 'automated liquid handling units' to research scientists based at one of the UK's new COVID-19 testing laboratories Asthma UK and British Lung Foundation Partnership have launched a post-COVID Hub and helpline for people left with breathing difficulties after COVID-19 Cancer Research UK institutes have donated equipment and reagents to national COVID-19 testing and have set up their own testing hubs Diabetes UK has launched a COVID-19 Rapid Response Research Call to further understanding of COVID-19 in relation to people living with diabetes Francis Crick Institute (funded by Cancer Research UK and Wellcome) and UCLH have developed a COVID-19 testing service for patients and NHS staff Lewy Body Society has collaborated with the University of Newcastle to produce an advice sheet for people living with Lewy Body Dementia, their families and their carers during the COVID-19 outbreak LifeArc has launched a £10 million fund to progress research into COVID-19 treatments and provides £2m to the University of Edinburgh STOPCOVID initiative MQ: Transforming Mental Health are working with the Academy of Medical Sciences, people with live experience, funders and the public to create a robust mental health research respond to COVID-19 MS Society have used their registry to survey people with MS about how the virus is affecting them and to learn if people on Disease Modifying Treatments are more susceptible Versus Arthritis has launched a Virtual Assistant to help people with arthritis get relevant health information related to COVID-19 quickly Wellcome has pledged £10 million to tackle COVID-19 epidemic Wellcome, Gates and Mastercard have launched $125 million fund to finance COVID-19 treatments AMRC member charities' positions and guidance Our member charities are publishing positions and guidance on COVID-19 for their grant applicants and grantholders as well as their patient communities. Organisation Guidance Summary of response Alzheimer's Research UK Position statement for researchers All applications currently under review will be discussed at the charity's Grant Review Board meeting in January 2021. Alzheimer's Research UK currently plan to open new rounds for funding in the Autumn. Any disruptions to research funding activities due to the COVID-19 pandemic will be taken into consideration by the charity's Board to make appropriate adjustments when assessing researchers' record of outputs, research achievements, and career progression. Alzheimer's Society Updated 25 March 2020 Managing the impact of Coronavirus on grants Contingency plans being developed to support research completion. Flexibility with no-cost extensions, underspend and virements. Clinicians returning to frontline to have salaries covered by NHS. Cost extensions considered case by case at end date of projects. Asthma UK and British Lung Foundation Partnership Published 27 March 2020 COVID-19 Update for Researchers COVID-19 – Message from the Asthma UK and British Lung Foundation Partnership Advice on key AUK and BLF funds and grants. Requests email contact for no-cost extensions to grant awards. Increased flexibility in how research funds can now be used. Will pay salaries if research institutions shut down for a period of time. Costed extensions to be considered on case by case basis. Bone Cancer Research Trust Published 1 April 2020 Charity statement - Changes to research grant programme All applications submitted to the current or recently closed funding calls will be considered as agreed, with the hope of these being discussed in July and awarded by the end of the year If projects can no longer proceed due to the closure of a university or clinical laboratory, the Trust will look to minimise the impact wherever possible. They will offer increased flexibility across their grants to enable researchers to manage their award. British Heart Foundation Published 27 March 2020 Statement on Coronavirus and research grants If research institutions shut down for a period of time, BHF will continue to pay the salaries of staff funded on grants for the same duration. If clinical research staff funded on grants are asked to support front line NHS staff, BHF will also continue to pay salaries, recognising that these costs may be subsequently recoverable from the NHS. Prepared to support requests for no cost extensions to grants to cover any delays caused by the suspension of research. If suspension of research is prolonged and costed extensions are required BHF will consider requests on a case by case basis. Cancer Research UK Updated 6 April 2020 Coronavirus (COVID-19): information for grant applicants and grantholders All panels and committees deferred until Autumn. Default position to offer a no-cost extension if needed. Includes clinical academics called back to the front line. Increased flexibility for grant holders. Updated 1 April 2020 Coronavirus (COVID-19) and cancer Information for patients page now includes text on clinical trials. Diabetes UK Published 30 March 2020 Guidance for Grant Holders Researchers should return to clinical practice with full support. PIs should make contact if award suspension needed. No-cost extensions supported. Costed extensions considered case by case. Ongoing clinical trials require risk evaluation before continuing. Updated 17 April Coronavirus (COVID-19) - advice for people with diabetes Guidance on a range of key issues affecting thoe with Diabetes, including symptoms, self-isolating, and interactions with healthcare professionals. Dunhill Medical Trust Circulated to researchers 12 March 2020 Grant award management for academic and clinical researchers All affected awards considered on case-by-case basis with costed and uncosted extensions made available. Fully supportive of researchers called to front line. Will provide costed or uncosted extensions, depending on circumstances. Not currently taking applications for new awards. Applications already in the system and awaiting a decision will hear the outcome per the originally agreed timetables. Fight For Sight Published 27 March 2020 Guidance to grant holders No planned change to the grant schedule for 2020/2021. Use 'No cost extension' request form where needed. Immediate contact urged for cost extensions, a policy for which is being developed. Moorfields Eye Charity Circulated to researchers COVID-19: Information for grants applicants and grant holders If access to where grant holders research is shut down for a period of time the charity will continue to pay the salaries and stipends of staff and students funded on grants for the same duration. If suspension of research is prolonged and costed extensions are required, requests will be considered on a case by case basis. Society for Endocrinology Updated 1 April 2020 COVID-19 guidance for Society Grants and Awards holders Flexibility with no-cost extensions and project start dates. Final report deadlines extendable as needed on case by case basis. Updated 1 April 2020 COVID-19 resources for managing endocrine conditions Guidance for clinicians (not for patient use) on range of endocrine conditions and key actions during the crisis. Updated 1 April 2020 Adrenal Crisis Information Advice statement on keeping adrenal insufficiency patients safe during the crisis. The Stroke Association Circulated to researchers 14 April 2020 Research Awards and COVID-19 Arrangements Will review any extension requests on a case-by-case basis and will work with researchers to agree a solution at the appropriate time. Researchers asked to explore alternative solutions such as remote working, teleconference meetings or re-ordering parts of their study. For grants which are in the early stages or have an appropriate stop point, grant holders can delay recruitment of staff or put the award into abeyance for a period. Versus Arthritis Published 20 March 2020 COVID-19 - Message from Stephen Simpson, Director of Research, Versus Arthritis Will support any local decision to move research personnel to front line duties and will work with teams after the crisis to explore ways for research projects to be reinstated. Recommend that any clinical research that has been recently award but not yet started, delay the start date to adjust to the possibility of not being able to recruit. Will be flexible on the use of underspend and budget virements to cover any exceptional and additional cost incurred by the COVID-19 pandemic to keep research activities going. Will offer no-cost extensions to awards if needed. Where costed extensions are necessary, these will be considered on a case by case basis as required. Current open calls and any future planned activity, including planned peer review of active calls will be paused. Wellcome Updated 9 April 2020 Coronavirus (COVID-19): information for grant applicants and grantholders Funding schemes and calls remain open for applications. Will pay salary and running costs in some situations if researchers are called to the front line. For other affected grants will consider extension or supplements.