The value of information

There can be little doubt that in recent years, the NHS has been the subject of increasing and more intensive scrutiny and concern. A wave of sometimes damaging reports has highlighted substantial problems in patient treatment and care, and exposed that the UK is woefully unprepared to cope with an ageing population.

There is an essential need to understand more fully the impact of a changing society on the NHS and the stress this is placing today, and will place in future, on an already overburdened system.

Future concerns
Our healthcare system in the UK is as much maligned as it is treasured. Despite the commitments of successive governments, there are some politicians who argue that the NHS budget ring fence needs to be removed. There are also concerns about the quality of care in some parts of the service. To compound these issues, UK society is rapidly changing. As a House of Lords committee on public service and demographic change reported earlier this year, “the gift of longer life” could lead to “a series of crises” in public service provision.

In order to meet the needs of a changing population adequately, the government and the NHS need to understand what is likely to change and the impact this will have on the service. Jane Frost CBE, Chief Executive of the Market Research Society (MRS), explains:

“Research can drive more effective patient engagement and secure value across the NHS. It can ensure the service is transformed for the better. Without such research, changes may potentially waste millions of pounds of public money at a time when efficiencies and savings are critical.

“The NHS has many examples of good market and social research that has both saved money and shown the way to better patient delivery. It’s important to find a way of keeping the knowledge it creates as a shared resource, not letting it get lost in inevitable reorganisations.”

Understanding how patients think
Research can be vital to help services gain a better understanding of the wider social and emotional context surrounding a long‑term condition. NHS Kidney Care commissioned the Ipsos Ethnography Centre of Excellence to conduct three ethnographic projects to understand the responsibilities patients, parents and carers have when managing a disease. Beverley Matthews, Director of NHS Kidney Care, explains: “Being a young adult is not easy. I expect most of us can remember the challenges we encountered at that age, but for many of us it is difficult to imagine what it would be like with the added strain of a long term condition.”

Researchers closely followed a number of people living with kidney disease to address three key responsibility questions; ‘who takes responsibility?’; ‘what that responsibility involves?’ and ‘when that responsibility should be taken’. One aspect of the study illustrated the issues that parents of young adults with kidney disease face during the transition to independent self-management and care – the difficulties they face emotionally and socially during this time – and to assist in identifying parents’ unmet support and information needs. Each of the parents involved were invited to discuss their views on the findings, which enabled the researchers to identify key indicators and themes important to parents. This insight was then used by the renal units to develop the support and information needed to help the parents of ‘transitioning’ young adults.

Films from these projects were presented at roundtable events where clinicians, support workers, charities, social workers, patients and their families discussed the key issues raised by the research. These discussions culminated in summary reports articulating key challenges and potential solutions to aid all parties with taking/handing over responsibility. Beverly Matthews adds: “These deeply personal films offer a powerful insight into the lives of young adults with long-term conditions. They highlight the issues that we in the health service need to focus on to improve transition care and to transform the experiences and outcomes for all our young adult patients.”

Frequently, it is small changes to communication, developed from a patient’s rather than the expert’s internal perspective which generate significant improvements in patient understanding and emotional well being.

Creating compelling engagement
NHS Dudley Public Health also used research to develop their cervical screening social marketing campaign. The trust found if women did not attend a screening when aged 25-29 they were less likely to in future – thereby putting their health at risk. Initial focus group research showed that women prioritised beauty treatments – such as getting a hair cut – over health appointments. The trust therefore used beauty as a key motivator in their campaign. As a result, the awareness of the symptoms of cervical cancer increased, more women were aware of the need to be screened and there was an increase in the number of women who said they would attend a screening. The campaign is now being expanded into new settings such as GPs surgeries.

How to conduct research
It’s important that any research that is conducted is reliable, robust and fit for purpose – from a methodological, legal and ethical point of view. This is even more important when the decisions will affect something as critical as the population’s health.

Jane Frost continues: “Research is very flexible and has the advantage of being agile and potentially inexpensive. You may have more information at your fingertips than you realise and you just need help to analyse it. The key is using competent and qualified research professionals – they will know how to keep costs down while delivering research that meets your objectives.”

It is important that commissioners of research understand all of the options available to ensure that they choose the right supplier and the right research approach. Qualitative research could involve research with small and potentially hard-to-reach groups who would not normally respond to quantitative research methods such as surveys or telephone interviews when discussing sensitive issues such as health. On the other hand, quantitative research is typically used to gain understanding from a large number of people across broader issues, which involve less sensitive health-related questions.

Jane Frost adds: “Professional research is underpinned by proven methodologies and a strong ethical framework detailed in the MRS Code of Conduct. MRS members and Company Partners have to abide by the MRS Code which, together with relevant legislation such as the Data Protection Act, provides a step-by-step guide to providing effective, impartial and ethical research. The MRS Research Buyer’s Guide ( lists all organisations and individuals who are committed to adhering to the MRS Code of Conduct together with their contact details, location and areas of expertise. When these legal and ethical rules and guidelines are met, research can provide unparalleled insight into the thoughts and opinions of patients, enabling the NHS and individual trusts to make evidence-based decisions.

Ethics are particularly important when dealing with some very sensitive subjects and vulnerable members of the public.

As can be seen, research is a critical tool to help the NHS and its hospitals and doctors understand the changes taking place and the impact this will have on the service.

Jane Frost concludes: “Critically, research will help everyone to understand not only what patients need and want but also how they feel. Recognising and managing emotional impact can go a long way to improving patient outcomes. It can drive better care, increase patient engagement and help the NHS understand how patients respond to diseases and treatments. In defining what patients’ value, it can frequently help reduce costs as well as assist in prioritising increasingly scarce resource. I have personally seen how research has been used to do both in the justice and tax systems. I believe it has a crucial role to play in ensuring that the NHS is transformed for the better.”

Further information