Strengthening patient and public engagement in health care decision-making and research is a key strategy for improving health and the quality and relevance of research. The Wanless report emphasised the importance of “fully engaged” patients and populace and the concepts of patient engagement, individual responsibility and choice are embedded in the Public Health White Papers ‘Choosing Health: Making Healthier Choices Easier’ ;‘Better Information, Better Choices, Better Health’; ‘The NHS Improvement Plan – Putting People at the Heart of Public Services’; Creating a Patient Led NHS – Delivering the NHS Improvement Plan’. A partnership between researchers and service users is also a key component of the Department of Health ‘Research and Development for a first class service’ and ‘Research Governance Framework for Health and Social Care’.

Over the last 10 years there have been significant developments to enable patients to make informed decisions about treatment options. Clinical practice has moved from a paternalistic approach to open discussions and shared decision making between patient and clinician. The benefits of patient engagement in decision about their own health are improved health care, improved treatment compliance and improved health outcomes. There is also increased involvement of the public in policy making, priority setting and developing health care guidelines.
 
Patient and carer involvement in planning and undertaking research is a rapidly advancing field. The Dementias & Neurodegenerative Diseases Research Network will play a key role in promoting active involvement of patients and the public in research. It is no longer acceptable to view patients as passive research subjects. The UK Clinical Research Collaboration (UKCRC) has emphasised the importance of ensuring that the patient/public voice is heard throughout the work of topic Clinical Research Networks, including DeNDRoN.

The Health Technology Assessment NHS R&D Programme has recently produced two important documents about user involvement ‘Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach’ and ‘Lay public’s understanding of equipoise and randomisation in randomised controlled trials’. The HTA conclude that ‘productive methods for involving consumers require appropriate skills, resources and time to develop and follow appropriate working practices’. The NCRN/ NCRI Think Tank on Consumer Involvement in Cancer Research has prepared a report about existing initiatives to promote consumer involvement in research and a draft implementation plan which identifies issues which will be considered by the Dementias & Neurodegenerative Diseases Research Network . The Mental Health Research Network Service User Group (England) has recent produced ‘Guidance for Good Practice. Service User involvement in the Mental Health Research Network’.

The perspectives of individuals who have first hand experience of a particular condition can make valuable contributions at all stages of the research process. Health professionals and researchers should work in partnership with patients, carers and at times the public to identify research priorities as their concepts and concerns may differ. People who use services should also have the opportunity to become actively involved in commissioning research as well as the design, development, peer review, conduct, reporting and dissemination of research findings. A partnership between researchers and service users should lead to research that is more relevant and credible to patients and the public and may also increase the public accountability and profile of funding organisations and researchers. Patient and carer participation should result in more valid and robust studies; a more balanced trials portfolio covering both standards of care and scientific innovations; more patient-centred study outcome measures, wider ranging studies across prevention, acute care, rehabilitation and long term support, and increased trial recruitment.

INVOLVE describes three levels of patient and carer / public involvement: consultation; collaboration; and consumer-controlled research. Top down methods e.g. consultation meetings often leave service users feeling excluded from the process and they may feel that they have been asked to rubber stamp decisions which have already been made. Bottom-up approaches such as local action groups may not adequately engage decision makers and so may not influence decisions. Opinion surveys enable wide and potentially representative coverage but may not address the issues which are important to service users and the public. Focus groups enable participants to express their views but they are often brief and do not enable people to be informed before they need to make up their mind.

The University of Newcastle, one of the DeNDRoN Coordinating Centre partners, has been successful in developing techniques to improve the interaction between professionals/policy makers and service users/the public in a number of areas including genetic and reproductive technologies, disability studies, ageing and nanotechnology. The PEALS (Policy, Ethics, and Life Sciences) team has been actively involved with developing citizens’ juries to address a number of complex issues e.g. developing health technologies to improve the quality of life of older people in relation to falls. A citizens’ jury involves unbiased selection of jury members and allows jury members to express an informed view on a subject according to their own principles and make recommendations about research or service development. The jury hears the views of specialists with different perspectives and come to a conclusion. The process is overseen by a panel of interested parties. A handbook and training video for participants in citizen’s juries, funded by the Joseph Rowntree Charitable Trust, have been developed.

There are a number of issues which need to be addressed to enable neurodegenerative patients and carers to become more actively involved in research. Although many of these issues cut across all the diseases incorporated into the Dementias & Neurodegenerative Diseases Research Network, there are also issues specific to each disease. The DeNDRoN Coordinating Centre is establishing a Patient and Public Involvement Road Map Group to oversee the development and monitor of the progress of patient and public involvement in the Dementias & Neurodegenerative Diseases Research Network.