This post is a summary of the conversation between the researchers and two undergraduate interns hosted by the Centre for Research in Intellectual and Developmental Disabilities (CIDD) for one month, June 2023. The content is the interns’ own personal reflections on the conversation.
Cerebra boasts an “extensive collection of research papers”, but is research actually influencing policy in the UK? Is research causing change or is this change developing from family advocates?
To answer these questions, we interviewed two researchers in the field of Intellectual Disability, Professor Richard Hastings and Louise Rixon, members of the Centre for Research in Intellectual and Developmental Disabilities (CIDD).
Louise Rixon is a CIDD PhD student and parent-carer of a child with autism and complex needs. She also works for a charity involving families which have children with developmental disabilities, including autism. The relationship between her autistic child and his siblings sparked her interest in the experiences of siblings, an interest furthered by her charity work. Louise’s interest was “very much born of personal experience”.
Richard Hastings is the head of department, professor, and Cerebra Chair of Family Research at CIDD. Recognised as being in the top 2% of most cited researchers in the world. Unlike Louise, Richard’s motivation was not personal experience, rather it was working in a service for adults with behavioural challenges and simply getting interested.
Richard Hastings and why research has a limited impact on policy
“Someone with a lot to contribute might not have the opportunity to do so.” – Richard Hastings
Richard’s unique position at the top of his field enables him to explain why research has a limited impact on policy—there are a “number of frustrations”.
However, in terms of directly impacting policy, researchers are limited in several ways. He underlines that you can have really interesting research, but experience and connections are important in communicating findings; otherwise, that research will not impact. Policymakers often lack understanding of science and researchers often struggle to communicate evidence clearly. Frustratingly, policymakers may be biased towards those with the “loudest voices” and the uncertainty of researchers cautiously presenting their often indeterminate findings can be difficult for them.
For example, Richard referred to the Winterbourne View scandal (2011). The exposure of the systematic abuse of intellectually disabled individuals at a care facility meant policymakers wanted to respond. Yet, not much has changed. Research was suddenly relevant but politicians largely ignored research evidence and brushed past the scandal. NHS England made a policy goal of moving patients back into the community but has continuously reported numbers of this objective failing. There are still scandals today of people in the same situation in residential services.
Richard summarised the policymaker-researcher relationship as hoping to meet the right people at the right place who have the right interest and are sympathetic to using evidence. If these line up, there is, perhaps, a window of opportunity for research to affect policy.
As “policy is very hard to influence”, how can research have a positive impact on policy? For Richard, researchers can make a more “direct contribution” in influencing how policy is implemented daily. Policy is hard to influence, what is a lot easier is trying to influence the guidelines/support needed to make day-to-day policy work. The best impact researchers can make is a “gradual upheaval” of policy.
Louise Rixon’s and research’s larger impact on the implementation of policy
Louise continues from Richard to explain how research can have a positive influence on the implementation of policy.
Policy is ambiguous meaning that what it looks like in practice is the result of how the local government interprets it. This creates a “postcode lottery” resulting in large disparities in the standard of care and support of individuals in different locations. Research plays an important role in evaluating these existing practices to understand what is working well and can identify gaps in this implementation of policy.
For example, Louise’s research ties in with the Welsh Social Services and Wellbeing Act (2014). This act is a legal framework aiming to improve the wellbeing of people who require care and increase carer support. Her research has identified problems with how this act has been implemented in her local area.
The Act uses the ambiguous “right to wellbeing”. This ambiguity has allowed Louise’s research to change how this right is conceived. One important point raised by Louise was that asking sibling carers “what they are not doing”, like getting a full night’s sleep or going to their friend’s house, is equally as relevant as asking them “what they are doing” in order to understand sibling carer wellbeing Working in partnership with local authorities is helping to identify where there are gaps in support for these sibling carers.
Therefore, research can creep into policy by influencing how policies are implemented in the local area.
Could ‘co-production’ of researchers and family carers be a greater solution?
“Research is about bringing in knowledge for (and with) the people actually being affected” – Louise Rixon
There is potential for research to have an even greater impact. Both Richard and Louise positively emphasise the importance of researchers and family carers collaborating through co-production. Co-production is when an individual influences the services they receive or groups collaborate on designing and delivering services (Care Act, 2014).
As both a family carer and a researcher, Louise shows how co-production can create positive change. She has participated in talks alongside other family carers to express concerns about policies and works in partnership with local organisations to help bring about change. Combining research with first-hand experiences of individuals with intellectual disabilities and carers can conceptualise the problems. By incorporating these, co-production connects those impacted to policy-making decisions and determines what is effective, helping policymakers create better solutions.
The National Institute of Health Research (2019) notes that knowledge mobilisation connects research to policymaking. Researchers collaborating with family carers ensure those impacted by policies are involved from the beginning. This can ensure that lived experiences shape policy. Richard summarises that co-production is a powerful process that can start influencing change.
How can research positively influence policy?
Both interviewees explained the large gap between research and policy. Researchers struggle to influence policy as it is written. The influence of research on policy is limited by policymaker beliefs and a lack of communication with policymakers.
However, there are positive takeaways. Research may have the greatest impact on the implementation of policy and can positively change lives on a local scale. Research is important for sparking conversations, increasing awareness, and leading to further research. Particularly, co-production between researchers and family carers ensures better policies for those affected.
Otherwise, charities enable researchers to have a hidden influence. Policymakers often reach out to charities for expertise, like Cerebra, who have a wealth of expertise and have supported several streams of research which have been used to impact policy decisions.
This is the state of the British research-policy gap. We hope for further ideas to help close this gap. There is a great focus on creating useful and interesting research, but there is not much point if the research is not being effectively used.