Recommandé
Recommandé
Contenu connexe
Tendances
Tendances (20)
Similaire à DeNDRoN Presentation December 2012
Similaire à DeNDRoN Presentation December 2012 (20)
DeNDRoN Presentation December 2012
- 1. What's new on the research front
- 2. “We want more people into clinical trials; more people getting that chance to get the very latest drugs. Our ambition is this: at least 10 per cent of people with dementia should be able to take part in clinical trials – up around ten times from today” March 26 2012: Prime Minister‟s Challenge on Dementia: Delivering major improvements in dementia care and research by 2015 The Prime Minister‟s Challenge on Dementia Delivering major improvements in dementia care and research by 2015 : A report of progress (November 2012) www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 3. Dementia Themed Call announced • £22million investment in 21 new studies into dementia research • An important step in solving the challenge presented by dementia • DeNDRoN will be helping to deliver many of these studies in 2013. www.dendron.nihr.ac.uk
- 4. Progress on the PM Challenge • Memory Services National Accreditation Programme (MSNAP) • Doubling dementia research • Investment in brain scanning • Social science research • Participation in clinical research • MRC Brain Bank • Major Industry event • Capacity building • Two international initiatives • Lab of molecular biology • Themed Call for Dementia www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 5. Where we fit in… Supports Commissions and funds NHS facilities for and social care research research (e.g. Biomedical Research Units) National Institute for Trains and Health Research develops researchers The Clinical Research Cancer Network: Dementia and Provides practical Neurodegenerative support researchers Diseases need to run clinical Diabetes studies in the NHS, Medicines for Children allowing more studies to happen, and more Mental Health patients to take part. Stroke Primary Care Comprehensive www.dendron.nihr.ac.uk
- 6. DeNDRoN delivers cutting edge research in the NHS www.dendron.nihr.ac.uk
- 7. A Local DeNDRoN Community 247 RESEARCH ACTIVE TRUSTS 4 BRCs/BRUs www.dendron.nihr.ac.uk
- 8. National Picture Increasing patient participation in research How DeNDRoN are doing it • Involving patients and carers in development of research study ideas • Recruiting participants into our studies quickly through our staff „on the ground‟ • Embedding research in clinical practice • 100% coverage across England (CLRN / DeNDRoN partnership) • 18 improvement projects to evaluate and compare different ways to embed research – toolkit to be released in March 2013 • Working with the Royal College of Psychiatrists to support research in its Memory Service National Accreditation Programme (MSNAP) – research standards added to the accreditation • Working with Social Care Institute of Excellence (SCIE) on Dementia Gateway to include a research element www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 9. Enabling Research in Care Homes - ENRICH ENRICH Toolkit Network of Research Ready Care Homes launched www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 10. Recruitment and Feasibility Tool (RAFT) • RAFT is a consent for approach register for patients with dementias. 1. Self-registration 2. Patients being asked in the course of their routine clinical care, if they are interested in being contacted about research, and signed up to the Register in some way. • Public facing website and helpdesk live in the new year. • 6 NHS early adopter sites to demonstrate this process from March 2013. www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 11. Impact of research For organisations it can: • Directly and indirectly enhances the quality of life for patients • Professional development opportunities for staff • Provide additional income to your service • Support from DeNDRoN local research network in the delivery of studies • Demonstrates your commitment to the Prime Minister‟s ambition “10% of patients into clinical research” • Research active centres have better outcomes • Generates research questions for local schemes www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 12. Patient’s benefit • Feel good – helping other people • Taking part in scientific advances (I was part of that!) • Learning more about the disease and about research methods • Improving self management • Improved outcomes (new treatments, more regular follow- up) • Opportunity to input into further research ideas and design www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 13. How patients can get involved? • Participate in a study • Engage in discussion groups • Develop patient and carer information leaflets • Support a research project or advisory group as a member • Become a champion for research • Talking in groups with researchers to discuss their research proposal www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 14. How NHS staff can get involved? • Talk to your patients about research opportunities • Signpost patients to the national register • Contact your Local Research Network • Find out what studies are available – UKCRN portfolio – Clinical Trial Gateway • Join the Memory Services National Accreditation Programme (MSNAP) and become research active. www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
- 15. Further information DeNDRoN Please visit our website or contact us on: T: (020) 3206 4960 E: info@dendron.org.uk W: www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk www.dendron.nihr.ac.uk
Notes de l'éditeur
- Presentation will cover:impact future research can have on treatment, best practice and quality of care. general talk about researchwhat is happening across the research field, PM challenge, and how patients/researchers can get involved. translational research angleWith an urgent need to better diagnose, treat and prevent dementia, what breakthroughs have been made in understanding the causes? With funding doubling to over £66m per year by 2015, what impact can future research have on treatment, best practice and quality of care?
- A progress report published in November gives an update on the first 7 months of the Prime Minister’s Dementia Challenge. The report outlines the aims, achievements and ambitions of the challenge’s 3 champion groups.There is a champion group for each of the following areas:creating dementia friendly communities that understand how to helpdriving improvements in health and carebetter researchPrime Minister has challenged us all to:raise the awareness around dementia, develop the capability and capacity of staff working with people with dementia, increase the numbers of people diagnosed with dementia (only 40% of people with dementia receive a formal diagnosis), Increase participation in research, ensure the quality of services is to a high standard, ensure a research programme can be conducted.The research champion group is chaired by the Chief Medical Officer Professor Dame Sally Davies, and Sir Mark Walport, Director of the Wellcome Trust. it aims to use the UK’s unique resources and influence to accelerate research into the condition. What have we achieved already?Patients and their data: Clinical Practice Research Datalink (CPRD) service launched to allow better access to anonymised NHS patient data. It will facilitate studies of epidemiology, diagnosis, care pathways, drug effects and side effects and outcomes research. CPRD will make clinical trials more efficient. NIHR DeNDRoN is enabling more people to sign up for research. It will be establishing a system to help people find and join research studies. This will help increase public participation in research from the current low level of approximately 4% of people known to have dementia. It is creating a large disease register of patients with dementia. We hosted a global research showcase in London featuring more than 150 researchers from global pharmaceutical companies and leading universitiesDiscovery science: The UK is investing in the very latest technology to model disease and better target drugs specifically to an individual patient using the patient’s own genetic information Translating research: Government provided £36 million for Translational Research Collaboration in dementia. These centres of excellence in dementia will work on commercial and non-commercial research to answer questions about early diagnosis, patient stratification and novel therapeutics.Implementing clinical research: The NIHR has invested £1 million to evaluate how quality of life can be improved through the impact of different memory assessment services and the withdrawal of prescribed anti-psychotic medication. Living well with dementia: to help people with dementia lead healthy, independent lives for longer: The ESCR and NIHR launched a call up to £13 million for social science research on dementia
- Pain HomelessnessImproving hospital careImproving physical health Assistive technologyStaff trainingFalls and fracturesTalking therapiesReducing deliriumManagement of behavioural problemsTerminal carePharmacological Treatments
- NIHR strategic aim: To improve the health and wealth of the nation through researchCentral role of the NIHRNIHR incentives for efficiency in research initiation and deliveryPublish clinical trial information against benchmarksFunding to NHS providers conditional on meeting a 70 day benchmark to recruit first patients for trialsHealth Research Authority - to combine and streamline approvals for health researchInitiatives to promote and increase patient access to researchNHS Constitution - consult on amending NHS Constitution so there is a default assumption (with opt out) that data can be usedClinical Practice Research Datalink - new secure data serviceClinical Trials Gateway website and “app” Outline the role of NIHR CRNTo support research to make patients, and the NHS, betterPractical supportIncrease the number of studies in the NHS
- Our ambition is for patients and healthcare professionals from all parts of the country to be able to participate in and benefit from clinical research. We help with the development, set up and delivery of clinical studies into the NHS. Including:The development of new research: providing advice for researchers on how to make their study feasible and aligned with NHS prioritiesIdentifying suitable NHS sites and recruitment of people to studiesThe people and facilities needed to enable research “on the ground”The active involvement of patients and carers in all parts of the research process
- Cambridge University Hospitals NHS Foundation TrustUniversity of CambridgeDementia£4,500,000Newcastle upon Tyne Hospitals NHS Foundation TrustNewcastle UniversityDementia£4,500,000 South London and Maudsley NHS Foundation TrustKing’s College London Institute of PsychiatryDementia£4,500,000 University College London HospitalsUniversity College LondonDementia£4,500,000
- Prime Minister has challenged us all to:raise the awareness around dementia researchIncrease patient participation in research to 10%DeNDRoN has set an ambition to double the number of people taking part in NIHR portfolio research. Since the network begun in 2007/08 we have done just that, and two years into this period, 16,455 people have been recruited to DeNDRoN portfolio studies for 2011/12.However the bar has now been set higher than ever before. To achieve the Prime Minister’s ambition for 10% of patients into clinical research, we will need to achieve a whopping ten-fold increase. We have the support of Government and are working closely with charities, funders and other organisations to set the wheels in action. But how are we increasing patient participation?Recruiting participants into our studies quicklyEmbedding research in clinical practice100% coverage across England (CLRN / DeNDRoN partnership)18 improvement projects to evaluate and compare different ways to embed research.Developing a nationally consistent system for patients to register their interest in researchDeveloping a network of ‘research-ready’ care homes.
- The ENRICH toolkitProvides a central information point for network staff and researchers seeking advice. It signposts to information, tools and advice that allows researchers to prepare and carry out research in Care homes. The website does not just focus on research in dementia, but is valuable for any research undertaken in a Care home setting. From the toolkit researchers will better understand the complexities of conducting all research in a care home setting and why more research is needed in this area. Care home staff and residents using the toolkit can learn about the different types of research, the ways you can get involved with research, how you can prepare for it and what this may mean in practice. NetworkIn September this year DeNDRoN launched the exciting next phase of their work the ‘Research Ready Care Home Network’. Initially being launched in the North Thames, Thames Valley, North West and Yorkshire regions this exciting new development aims to bring together researchers and Care Homes to establish local networks which will support planning, delivery and recruitment to research studies in all fields.The network hopes to recruit over 200 Care Homes over the next four months, and will is expected to cover the whole country by the end of 2013.Recently announced that BUPA, Barchester, Carehomes.co.uk are partners in the Network and it has now been launched in Scotland.
- What is RAFT? RAFT is a consent for approach register for patients with dementias. It provides a place for patients, carers and the public to register their interest in being contacted about research studies of interest to them. It also provides a route for researchers to run feasibility and recruitment queries, and to initiate an approach to patients matching their search criteria, to understand jointly if the patient would be right for the study at hand. RAFT will only be used by researchers who are working through the DeNDRoN portfolio, and who have the necessary ethical and local R&D approvals for their study.How will people get on the Register?There are two ways for patients / carers to get on the Register: Self-registration: Through a website (and a telephone service), which is publically available Through being asked, in the course of their routine clinical care, if they are interested in being contacted about research, and signed up to the Register in some way, in situ. RAFT is working with 6 NHS early adopter sites, to demonstrate this process.When patients sign up to the Register, a note will be sent to their GP and treating hospital clinician to inform them of the fact. Where the clinician disputes to patient’s capacity to consent, the Register will facilitate a discussion with patient and clinician to reach agreement. What information is held on the Register? A consultation exercise was held earlier in 2012 across DeNDRoN, to identify a minimum dataset for RAFT. The resulting data items (there are about 40) are a mixture of: Demographics (name, address, phone number etc.) Consent information (has the patient consented? To what? When? Where? etc.)Preferences information (when is the best time to contact you? Do you want to be contacted about non-study related research participation opportunities? How far are you prepared to travel? Clinical and NHS information (basic: diagnosis, drugs and dosage, treating GP, treating hospital and hospital clinician etc.) How will the ‘approach’ to patients work?Researchers will run queries against the system to identify patients suitable for contact. The patient information they see is pseudonymised – meaning the identifiers are obscured. Depending on the ethical approvals and R&D approvals of the researcher, he / she will either: Send an automated message direct to the patient via the RAFT system. The patient will be sent information on the study and asked if they are happy for their information to be passed to the researcher. (the researcher does not see identifiers unless the patient responds to say they are content for their information to be passed on). Contact the treating clinician to ask them to approach the patient and ask if they would be happy to have their contact information passed to the researcher (N.B This may be done by a nominee of the clinician i.e. the local DeNDRoN Team, or via a central Service Desk – but there will need to be data sharing agreements and personnel contracts which underpin data sharing for each scenario)In cases where the patient identified is local to the (NHS) researcher i.e. te researcher is the patient’s treating clinician, a legitimate relationship exists, allowing the researcher to see identifiers for the patient and contact them directly. What is the role of NHS clinicians and administrators?NHS clinicians and administrators will need to alter their ways of working to accommodate the following: Asking if the patient is interested in research, and being on the Register Recording the response. If yes, recording at least basic contact details for the patient Potentially dealing with a higher number of inquiries from research users of the systemWhat are the governance implications?Information Governance (for the data RAFT holds) RAFT will hold identifiable data, and will conform to its legal obligations in the processing and sharing of these data. NHS Information Governance Toolkit requirements will be met for the processing of patient identifiable data and sound consent processes will be in place to ensure consent is meaningful. To be clear, the Register will be seeking explicit consent or opt in from patients. Therefore S251 approval (NHS Act 2006) will not be sought. The consent form will ask permission for hospital and GP records transfer to complete the Register’s minimum dataset. It will also ask for permission for NHS staff who are local to you to screen your patient notes on behalf of the researcher, where further screening is required to reduce and refine the potential cohort. Other considerations and next stepsDue consideration will need to be given to the governance requirements and timescales at each early adopter site, to ensure the use of NHS data, as described above, is done with the permissions needed. How is RAFT being delivered? A limited release of the web tool is planned for December / January, with the full phone service delivered in April 2013, and the early adopter sites live (phased) from March 2013.
- How can research impact on treatment, best practice and quality of care?
- Talk to your patients about research opportunities Ask the generic research question and signpost patients to research Signpost patients to the national registerContact your Local Research Network to find out about research opportunities and studies in your area Access the database to see what studies are on the UKCRN portfolioVisit the Clinical Trial Gateway for information on studies through your mobile Local memory services can join the Royal College of Psychiatrist Memory Services National Accreditation Programme (MSNAP) and become research active.