1. PATIENTS IN RESEARCH www.patientsinresearch.org RESEARCH CULTURE

2. PATIENTS IN RESEARCH www.patientsinresearch.org We aim to create a research minded culture across the entire NHS. Ensuring organisations and staff at all levels, accept, understand and play their role in communicating, acting and helping improve patient participation in research studies, putting research with care.

3. PATIENTS IN RESEARCH CULTURE Whole Organisation Engaging Trusts Training Commissioning

4. PATIENTS IN RESEARCH CULTURE DeNDRoN non-commercial studies currently in set- up represent an estimated £35M investment in dementias and neurodegenerative diseases research. This demonstrates how DeNDRoN is supporting researchers, and ensuring the government’s commitment to double research funding is supported. Delivering for Dementia & Neurodegenerative Disease

5. PATIENTS IN RESEARCH CULTURE Whole Organisation ‘We spend a lot of time trying to get people participating in studies when we should be focussing that time on research so if we can reduce that time it would free up a lot more time for research’ Professor Clive Homes ‘This consent process should ideally be part of the initial consultation, but could be carried out at any stage of the patient’s care if this was more appropriate.’ David Higenbottam, LRN Manager ‘I hope you know that the Board is totally committed to us being a research orientated Trust, and the benefit this brings both to service users and staff.’ Maggie Wheeler, Chair, Norfolk & Suffolk NHS FT

6. PATIENTS IN RESEARCH CULTURE To ensure funding and studies remain focused on the needs of patients, DeNDRoN has also established task forces to improve studies in Parkinson’s Disease, Motor Neuron Diseases, Huntington’s Disease and for all forms of Dementia. Delivering for Dementia & Neurodegenerative Disease

7. PATIENTS IN RESEARCH CULTURE Engaging Trusts By encouraging open forums for discussion and debate, opinions and attitudes can be challenged All ideas aired in such forums can have merit and that it may be some of the more unusual suggestions that will lead to a previously untapped avenues being explored Attend Trust induction days and other meetings to raise awareness about the clinical research networks but ensure that events attended are relevant and a good use of time and resource.

8. PATIENTS IN RESEARCH CULTURE Training Before “I don’t know anything about research, nor do I need to know” “I feel weary about letting my patients take part in research, as they are frail and I don’t feel it help them” “It’s the clinicians responsibility to talk to patients about research” After “I understand the importance of getting people involved in research to change the future of dementia” “Every patient should be given the opportunity to take part in research” “Its everyone’s responsibility to make patients aware of what our trust is doing on the research agenda: board to ward”

9. PATIENTS IN RESEARCH CULTURE Over the past two years DeNDRoN has provided pre-application support for 39 studies for approximately £36m around half these have already received funding. Delivering for Dementia & Neurodegenerative Disease

10. PATIENTS IN RESEARCH CULTURE Commissioning Adam Smith, programme manager with DeNDRoN, recognises that this project is still in its infancy. ‘Progress has not been linear due to the changing policy context. So the benefits have not yet filtered down to increasing the numbers of patients into studies. But it is important to remember that this project was set up with the historical backdrop of absolutely no engagement with commissioners regarding research’. “It is vital that it is understood that ‘research’ covers a very broad gamut of possibilities. Everything from questionnaires investigating the components of care for people with dementia to possible new curative molecules for treating dementia is covered by the term ‘research’. When it comes to raising awareness, having this phrase incorporated in CCG authorisation documentation and on the NHSCB website is an important move in the right direction.” Dr Peter Brindle

11. PATIENTS IN RESEARCH CULTURE DeNDRoN has supported over 50,000 patients to become involved in clinical research over the past four years – more than doubling the annual number of participants. Delivering for Dementia & Neurodegenerative Disease

12. PATIENTS IN RESEARCH CULTURE \ \ The health and care system from April 2013 Delivering for research: DeNDRoN has been working across the health sector to promote research and ensure that all organisations share common messages Royal Colleges Charities Regulators Commissioners Providers

13. PATIENTS IN RESEARCH CULTURE DeNDRoN is involved with 247 trusts, and leads the way in performance in the commercial sector with 80% of studies in 2011-2012 delivered on time and target (100% in Q3 of 2012/13). Delivering for Dementia & Neurodegenerative Disease

14. PATIENTS IN RESEARCH CULTURE The NHS Mandate supports research It states: The NHS Commissioning Board’s objective is to ensure that the new commissioning system promotes and supports participation by NHS organisations and NHS patients in research funded by both commercial and non-commercial organisations, most importantly to improve patient outcomes, but also to contribute to economic growth. This includes ensuring payment of treatment costs for NHS patients taking part in research funded by Government and Research Charity partner organisations.

15. PATIENTS IN RESEARCH CULTURE DeNDRoN has supported over 400 studies in the past four years, and is currently supporting delivery of over 125 studies across England. This number will significantly increase over the next 3 years, reflecting the government priority on dementia. Delivering for Dementia & Neurodegenerative Disease