PATIENTS IN RESEARCH

RESEARCH PARTNERSHIPS

www.patientsinresearch.org

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.

www.patientsinresearch.org

PARTNERSHIP

• • • • • Working with Charities Patient Engagement Royal Colleges Communications Signposting Patients

PARTNERSHIP

Delivering for Dementia & Neurodegenerative Disease 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.

PARTNERSHIP

• Working with Charities

PARTNERSHIP

Delivering for Dementia & Neurodegenerative Disease 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.

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

PARTNERSHIP

• Working with Charities

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 Enable staff engagement by setting aside time for them to prepare talks and attend meetings Build strong relationships with key contacts at each group

PARTNERSHIP

Delivering for Dementia & Neurodegenerative Disease Over the past two years DeNDRoN has provided

pre-application support for 39 studies for

approximately £36m around half these have already received funding.

PARTNERSHIP

• Working with Charities

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

PARTNERSHIP

Delivering for Dementia & Neurodegenerative Disease 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.

PARTNERSHIP

• Communications Utilise existing guidance and resources to support quick and effective delivery.

PARTNERSHIP

Delivering for Dementia & Neurodegenerative Disease 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).

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.

PARTNERSHIP

Delivering for Dementia & Neurodegenerative Disease

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.