Dr Richard Weller. NHS Research Scotland (NRS) Dermatology Lead

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Presentation transcript:

Dr Richard Weller. NHS Research Scotland (NRS) Dermatology Lead Clinical Research in Dermatology in Scotland- challenges and opportunities Dr Richard Weller. NHS Research Scotland (NRS) Dermatology Lead

Chief Scientists Office CSO is part of the Scottish Government Health Directorates. Our vision is to support and increase the level of high-quality health research conducted in Scotland. This is for the health and financial benefits of our population so that Scotland is recognised globally as a ‘come to place’ for health science. Prof David Crossman

NHS Research Scotland Partnership Collaboration Aim CSO NHS Boards in Scotland Collaboration Academic Institutions Commercial companies Aim Agree & Implement national policy Deliver efficiency through pan-Scotland working Scottish Government Health and Social Care Research Strategy - http://www.gov.scot/Publications/2015/10/5164 Sets the strategic direction for NHS supported research going forward Political commitment to supporting clinical research Six guiding principles Build whenever we can on the strong academic base Seek out and deliver collaborative partnerships with a tripartite mission of research, education and delivery of quality health care, underpinned by a significant infrastructure investment Exploit our ability to link information from health, social care and non-health sources using data to support better treatment, safety and research De-clutter the pathway for the regulation and governance of health Deliver collaborative arrangements with the biotechnology, pharmaceutical, informatics and medical devices industries. Collaborate across the NHS family, academia and with other funders to position Scotland as a single research site when it makes good sense to do so A Health and Biomedical Informatics Research Strategy for Scotland - Enhancing research capability in health informatics for patient and public benefit (2015-2020) Complementary strategy document published in 2015 which sets out the use of high quality data as a cornerstone of the best health systems, and proposals to help drive service improvement as well as research productivity. Other Scottish Government Policy (TBC IF REQUIRED) A Data Vision for Scotland - supports trustworthy uses of data for public benefit The Data Linkage Strategy – ‘Joined Up Data for Better Decisions’ sets out our ambitions for making better use of data that already exists in Scotland The Data Linkage Framework –supports collaborative working, sharing of best practice and joined-up approaches to resource The Scottish Informatics and Linkage Collaboration (SILC) – comprises services and facilities to support data linkage across all sectors to ensure that Scotland realises the benefits that can be derived from legal, ethical and carefully controlled use of data. The wider SILC network includes Farr and the ADRC. The Guiding Principles for Data Linkage – The Data Linkage Framework Programme Board (now SILC- SMB) Public Benefit and Privacy Panel Help deliver high quality studies in the NHS Provide a solid infrastructure to deliver trials to time and target Work across Scotland supporting all NHS boards Connect NHS, industry and academia  Help involve patients and the public in research Provide advice, support and performance monitoring No gap between policy, funding and delivery: All round the table working to the same agenda

Current Dermatology trials in Scotland BADBIR B-STOP - Bio-markers of Systemic Treatment Outcomes in Psoriasis Gene Therapy for Netherton Syndrome HI-Light Vitiligo Trial ALPHA study - Comparison of Alitretinoin with PUVA Study of rare cutaneous lichenoid, alopecic and scarring variants. Ultraviolet A1 plus narrowband UVB for atopic eczema. Connexin-mediated signalling events in the pathogenesis of psoriasis. APRICOT. PLUM The Immunology of Alopecia, and an Alopecia Biobank Genetic Skin Disease in Scotland A study of menthol for pain relief during photodynamic therapy.

Direct Research Funding CSO Investments Direct Research Funding Response Mode Committees / Catalytic Grants Clinical Fellowships / Charity Collaborations / Research Units UK-wide Research Funding Contribution Scottish-based research access to NIHR funding streams EME / HTA / HS&DR / PHR NHS Research Scotland Support Budget Activity based allocation to NHS Boards Researcher Support / NRS Fellows / CRF-type posts/ ETC’s Topic-specific Networks

Networks & Specialty Groups Cancer Dementia & Neurodegenerative Disease Diabetes Mental Health Paediatrics Primary Care Stroke Specialty Groups Cardiovascular Reproductive Health Musculoskeletal Health Age and Ageing Critical care Dermatology Gastroenterology Genetics Haematology Hepatology Infectious Diseases Metabolic and Endocrine Ophthalmology Oral and Dental Renal Respiratory Aim is for each study to be overseen by one Network or Specialty Group

What studies do we support? High quality studies which are defined as research, involve NHS patients, data, staff or facilities, and which are eligible for the Scottish research portfolio Not service evaluation or audit Research question- generisable results Ongoing in the NHS/require NHS resources

Studies that are automatically eligible for the portfolio in Scotland Studies led by Scotland with a Funder appearing on the Scottish Eligible funders list British Skin Foundation Psoriasis and Psoriatic Arthritis Alliance (PAPAA) Psoriasis Association Studies led by England with a Funder appearing on the NIHR non-commercial partner list Studies Sponsored by a commercial organisation All these funders have self declared that they award funding in open competition and that the studies they fund are peer reviewed

Potentially eligible Studies funded by an overseas government, overseas charity or Investigator Initiated (commercially funded but academically sponsored) Meeting the following criteria: Funding awarded in open competition Peer reviewed Clear value to the NHS Reviewed for adoption If the your funder does not appear on the list we can potentially support the study if it meets the following criteria and can be put forward for adoption,

Benefits of Portfolio Eligibility Support from Networks and Specialty Groups Access to core infrastructure support- E.g CRF and Nurse resource Treatment and support costs involved in conducting research do not need to be covered by Grant. Board receives researcher support funding for eligible studies Lesley Peebles will speak more about this later

Costing Research NHS bears cost of treating patients, even if that treatment is experimental Applies to both commercial and non- commercial Important to identify and quantify the full cost of research Arrangements should then be in place to recover costs, so that studies are not underfunded CSO also provide some core funding to develop the underlying infrastructure – Board allocations are activity based

UK-wide working Scotland Northern Ireland Wales England Shared Ethics system SSI unique to Scotland Studies adopted to NRS portfolio receive support UK Clinical Research Network Portfolio NIHR funding to NRS to Clinical Research Centres England

http://www.cso.scot.nhs.uk/outputs/cso-funded-research/caf/

NRS Career Researcher Fellowships Protected time (2 sessions p.w. for 3 years) to engage in following activities: Clinical research planning and protocol development Grant writing Carrying out clinical research Leading or hosting multi-centre trials as chief investigator or local principal investigator Participation in commercial research Dissemination of research findings, such as writing papers and presentations at major national and international scientific meetings

NRS Career Researcher Fellowships 115 NRS Fellows appointed to date Round 1 – 31 Fellows Round 2 – 32 Fellows Round 3 – 9 Fellows – (including one nurse consultant) Round 4 – 17 Fellows – (including one Neuropsychologist) Round 5 – 12 Fellows – (including 3 nurses 1 clinical psychologist)   Round 6 – 34 Applications - 14 Fellows appointed North and East node – 4 applications – (1 NMAHP, 3 Consultants) – 2 appointed West Node – 13 applications (2 NMAHP, 1 GP, 10 Consultants) – 6 appointed South Node – 17 applications (8 NMAHPs, 9 Consultants) – 6 appointed Round 1 and 2 cohort – almost all now receiving NRS researcher support

Questions What are impediments to entering studies- ongoing ones and also starting new ones? How can we all be like Kirkcaldy?

What and Why Help deliver high quality studies in the NHS Provide a solid infrastructure to deliver trials to time and target Work across Scotland supporting all NHS boards Connect NHS, industry and academia  Help involve patients and the public in research Provide advice, support and performance monitoring Metrics. Increase total income from both commercial and non-commercial studies R&D permission within 30 calendar days Increase recruitment to commercial and non-commercial studies Recruit first commercial study patients within 30 calendar days of gaining NHS permission Increase the percentage of commercial studies recruiting to target Ensure Research and Development is given prominence within the wider activities of the Health Board Meeting these objectives has wider health and wealth benefits to Scotland

To place Scotland at the international forefront of clinical research. Dermatology                                                                                                                                                                                                                                                                                                                                                                                             To support and promote excellence in clinical research in NHS Scotland, that will mAKE A POSITIVE DIFFERENCE TO PATIENTS HEALTH WITHIN SCOTLAND, THE UK AND Our role is to support the delivery of high-quality clinical research in Dermatology and manage participant recruitment to time and target, both for Dermatology studies which are led from Scotland, and studies led by other nations which Scottish sites are participating in To place Scotland at the international forefront of clinical research. Our Mission Our Vision To place Scotland at the international forefront of clinical research. Our Mission To support and promote excellence in clinical research in NHS Scotland, that will make a positive difference to patients health within Scotland, the UK and internationally. Our role is to support the delivery of high-quality clinical research in Dermatology and manage participant recruitment to time and target, both for Dermatology studies which are led from Scotland, and studies led by other nations which Scottish sites are participating in.