Why it is crucial to involve families in all stages of childhood disability research Christopher Morris, Val Shilling, Camilla MCHugh, Katrina Wyatt Cerebra Research Unit and PenCLAHRC, Peninsula Medical School, University of Exeter, Exeter, UK. Correspondence to: chris.morris@pms.ac.uk doi: 10.1111/j.1469-8749.2011.03984.x SIR–The idea of family-centred research was raised in DMCN in a recent editorial. 1 Rosenbaum considered the pros and cons of partnerships between researchers and families where the families have greater power to influence the research agenda and how research studies are designed. We were con- sulted when the editorial was being written and directed Pro- fessor Rosenbaum to relevant references on how public and patient involvement is evolving in the UK. We write to further the argument and express our strong view that it is crucial to involve families of disabled children, meaningfully, in all aspects of research. We also suggest that it is vital that service providers are involved in this partnership, including clinicians and those responsible for commissioning services. We set out the theoretical arguments and describe our experiences in pur- suing such an approach. Our aim is to promote the involve- ment of families in childhood disability research. We view family involvement as one of the most important contempo- rary issues in producing research that is relevant to improving the health and well-being of disabled children and their fami- lies. PREMISE FOR INVOLVING FAMILIES IN RESEARCH There are three key premises. From a philosophical perspec- tive, families should be involved in deciding the research agenda as the research concerns them and those in similar life circumstances. Families are uniquely placed to consider which lines of research enquiry are most relevant and likely to have influence on their lives. Second, there are pragmatic advanta- ges to involving families in deciding which research questions will be addressed and how studies are designed. Families are more likely to want to take part in studies that address their own priorities, and do so using research procedures that are designed to be acceptable to them. The third premise is not universal; involving patients and members of the public in research is mandatory in the UK when applying for govern- ment-sponsored funding streams. The rationale for involving members of the public in deciding the research agenda is pred- icated on the fact that, in a publicly funded system such as the NHS, it is their taxes which are used to subsidize the research, so they have a democratic right to have an influence on what is supported. PREMISE FOR INVOLVING SERVICE PROVIDERS Applied health research seeks to directly influence clinical practice; for example, which treatments are provided, or the way health services are organized and delivered. Therefore, the topics addressed in applied health research, and the results, must seem salient to the people with responsibility for making the relevant clinical, health, and / or social policy decisions, and for allocating resources. So, while the thrust of our argument is the involvement of families in childhood disability research, key service providers must also be represented in a partnership with researchers and families. THE CONCEPT OF INVOLVEMENT Our definition of involvement encompasses all stages of research; including developing ideas, prioritizing issues, refin- ing research questions, designing studies, finding funding, carrying out the research, and disseminating results. INVOLVE is a UK advisory group which supports greater public involvement in NHS, public health, and social care research. INVOLVE define three levels of involvement as con- sultation, collaboration, and user-control; 2 based on Arnstein’s 3 ladder of citizen participation. Implicit in Arnstein’s model is the notion that involvement in decision-making is hierarchical in nature with citizen control held up as the goal of participa- tion. This assumption does not always align with participants’ reasons for engaging in decision-making processes. 4 Therefore, the level of each family’s involvement should be determined by what contribution and commitment individuals want to make. Consultation The views of service users, carers, and patients are sought to inform the research; for example by providing different scenarios and asking families which procedures would be more acceptable. Collaboration A partnership between researchers and service users, i.e. patients and carers, is created to deliver the research. Mean- ingful collaboration requires researchers and families to work closely together as a team, and to appreciate the knowledge, skills, and experience that each brings. User-control The most power that families can exert in childhood disability research is for them to actually lead the study, and have con- trol over all aspects of the design and delivery of the research. In the past this has sometimes been viewed as ‘action research’ or even ‘activism’; however, user-led health research increas- ingly involves well-designed studies and is gaining wider credibility. ª The Authors. Developmental Medicine & Child Neurology ª 2011 Mac Keith Press doi: 10.1111/j.1469-8749.2011.03984.x 769 DEVELOPMENTAL MEDICINE & CHILD NEUROLOGY LETTER TO THE EDITOR