PATIENTS IN RESEARCH RESEARCH PARTNERSHIPS

PATIENTS IN RESEARCH We aim to bring together researchers, clinicians and staff from across the NHS. Working with charities, voluntary organisations, patients, carers and the public. Working in partnership to make participation in research an option for every NHS patient, putting research with care.

PATIENTS IN RESEARCH PARTNERSHIP Working with Charities Patient Engagement Royal Colleges Communications Signposting Patients

PATIENTS IN RESEARCH PARTNERSHIP 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

PATIENTS IN RESEARCH PARTNERSHIP Working with Charities

PATIENTS IN RESEARCH PARTNERSHIP 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

PATIENTS IN RESEARCH PARTNERSHIP Working with Charities ‘When the total staff costs for this project were analysed, we discovered that the overall per patient recruitment cost was £81. This is considerably lower than the previous figure for recruitment into the PD Discovery and PD Exercise studies of around £103 per patient. This offers compelling evidence of the value of engaging directly with Parkinson’s groups’ Olivier Bazin ‘A third of our study participants first heard about the project through one of DeNDRoN’s talks at a local Parkinson’s UK group’ Dr Johnny Collett, Project Lead for PD Exercise Study, Oxford Brookes University ‘Traditionally those affected by Parkinson's have got involved in research through talking to the health professionals (consultants, nurses, etc). The Thames Valley Dendron project has added to that, synergistically, by putting people direct in touch with researchers through Dendron.’ Martin Tims, Volunteer RSO, PUK Oxford & District branch

PATIENTS IN RESEARCH PARTNERSHIP Working with Charities Build strong relationships with key contacts at each group Enable staff engagement by setting aside time for them to prepare talks and attend meetings Ensure that staff are offered adequate training to allow for flexible, interdisciplinary working and that job descriptions accurately reflect the workload and reference to out-of-hours working Recognise the pressures that staff face in taking on additional work above and beyond their normal duties and ensure that activity is aligned to available time, being realistic with demands

PATIENTS IN RESEARCH PARTNERSHIP 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

PATIENTS IN RESEARCH PARTNERSHIP Working with Charities Collaborate with local support groups and charities by offering to visit the group to present about locally recruiting studies and to distribute relevant literature Create long-term partnerships with the groups by offering research articles for local newsletters and biannual talks Ensure that there are relevant research studies and clinical trials recruiting in the areas with which patients can get involved

PATIENTS IN RESEARCH PARTNERSHIP 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

PATIENTS IN RESEARCH PARTNERSHIP Communications Utilise existing guidance and resources to support quick and effective delivery.

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

PATIENTS IN RESEARCH PARTNERSHIP Patient Engagement Broaching the subject of involvement in a research study or clinical trials can be tricky. Who is the best person to do this? And how should a patient be asked? Conventionally the onus to do this has rested with the consultant looking after the patient but, as our expectation of experiencing the very best that our NHS can offer, more and more people are becoming aware about getting involved in research raising the possibility of recruiting greater numbers into trials.

PATIENTS IN RESEARCH PARTNERSHIP 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