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 charities, 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. Our response work 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. Support for our member charities We launched an online forum to help our member charities share information, questions and concerns about the impact of COVID-19 on research, patients and organisations. Over 200 individuals have joined the forum. Most of our member charities have had 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 others. To help with this we started advertising member charity volunteer opportunities in our weekly mailing. We hold regular virtual meetings with member charity CEOs to update them on our COVID-19 response work, listen to their concerns and answer any questions they may have. Demonstrating impact Since the UK went into lockdown, we’ve carried out three surveys to capture the immediate and long-term impact of the pandemic on our member charities. We used the results to develop a briefing, infographic and individual graphics. We're encouraging our members to use these in communications with Government, stakeholders, supporters, and the general public. So far, the infographic has been viewed over 1,000 times. Reactive statements When funders started pausing non-COVID19 research to focus efforts and resources on the pandemic our CEO commented that these decisions should be made with the impact on patients in mind and must be communicated transparently and sensitively. We monitored developments on Government’s Job Retention Scheme and published a statement highlighting lack of clarity for what can and should be done for researchers that charities fund. When Government published their Research and Development Roadmap, we responded welcoming recognition of the need to invest in UK R&D and imploring Government to help save charity-funded research. Working with Government We’ve been working across Government to add to their evidence base on the impact of COVID-19 on charity-funded medical research. When the Chancellor announced a £750 million charity support package we sent a letter to stress that medical research charities are unlikely to benefit from this package. We’re currently leading a call for Government to commit to a matched funding agreement to save charity-funded research. Our Life Sciences-Charity Partnership Fund proposal sets out a co-investment scheme that provides a level of match funding from Government for future charity research over the next three years. It asks for at least £310 million from Government in the financial year 2020/21 to bridge the sector’s projected research spend gap. This would be matched by funding from charities to maintain consistent research investment. We’ve shared this proposal with our member charities, key ministers, senior civil servants, and parliamentarians. Our Chief Executive has also written a blog urging the Government to act now to save charity-funded research. The Chancellor of the Exchequer received an open letter signed by over 50 cross-party Members of Parliament urging Government to commit to our Life Sciences-Charity Partnership Fund. The letter was featured in The Guardian. MPs Chris Green (Conservative) and Chris Bryant (Labour) have also advocated for medical research charities in the House of Commons. Media engagement We’ve held a virtual media briefing via the Science Media Centre. Our Chief Executive and Chief Executives from Cancer Research UK, British Heart Foundation and Parkinson’s UK spoke about the devastating impact the pandemic has had on medical research charities, how this will affect patients and the need for Government to commit to the Life Sciences-Charity Partnership Fund. A press release, featuring quotes from all four Chief Executives and keys stats about the impact on the individual charities, was circulated to the Science Media Centre’s health and science journalist mailing list. Since then, the story has been spotlighted in over 30 news outlets including The Guardian, The Times, The Telegraph, Daily Mail, Sky News and Channel 4 News. Sector statements and 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 Association of Research Managers and Administrators Updated 18 June 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 June 2020 Coronavirus information hub for charity tax and finance professionals A useful explainer on the changes to the Job Retention Scheme since HMRC's announcement on 12 June, which will come into force from 1 July 2020.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 Business, Energy and Industrial Strategy Published 5 June 2020 Coronavirus Job Retention Scheme: supplementary guidance for research organisations Government has published further guidance on the Job Retention Scheme for research organisations. Department of Health and Social Care/ National Institute for Health Research Published 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 1 July 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 3 July 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 26 June 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. The UK Clinical Academic Training Forum (CATF) Updated 3 July 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. University College London Updated 2 June 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. The Academy of Medical Sciences has created a new career support space for biomedical and health researchers during the COVID-19 pandemic. 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 resources 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 Charities supporting the national response 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, alongside NIHR and UKRI, are-cofunding a £1.3 million national research programme to evaluate coronavirus tests in hospitals, general practices and care homes 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 Charity statements 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 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 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 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 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 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. Coronavirus (COVID-19) and cancer Information for patients page now includes text on clinical trials. Diabetes UK 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. 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 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 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 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. 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. Adrenal Crisis Information Advice statement on keeping adrenal insufficiency patients safe during the crisis. The Stroke Association Circulated to researchers 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 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 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.