Finding medical solutions from patient research

There have been a number of damaging reports in the care sector recently both in terms of wider care for vulnerable people and, specifically, health services. The NHS is under more pressure than ever before to improve its services.

Questions have been raised regarding patient treatment and quality of care, and the organisation has been exposed as ill-prepared to handle the UK’s ageing population. Financial uncertainty is creating a fear of further cuts which is stalling decision-making across the organisation.
If the NHS is to improve, there must be a better comprehension of the challenges it is facing. Society and technology are evolving faster than the NHS – the country’s growing elderly population is intensifying service pressures, and the organisation is not always utilising new technology as quickly as it could. Without in-depth analysis of these changes alongside better engagement with patient needs, the organisation will struggle to catch up and improve its service.
One way the NHS could glean further understanding is through carefully considered market and social research. Evidence leads organisations in the right direction, allowing them to respond to real needs more quickly. It ensures both intelligent changes that lead to positive transformations and helps avoid costly commitments that don’t answer needs in a cost-effective manner. For the NHS this could mean a more tailored service which values patient engagement and offers opportunities to make savings across stretched resources.  

Getting the most from data
It is understandable that in the NHS, more than any other organisation, the focus will often be on immediate solutions and reactive management. Yet especially now, when spending is being scrutinised, it is critical that valuable funds are not wasted on implementing poorly researched solutions. Decisions are increasingly reliant on insight. The quality of data and the insight gained from it will be critical to the supply chain.
Research that doesn’t complement an organisation’s goals and isn’t focused on outcomes will lead to changes being implemented on a lack of evidence – changes that could cost far more to rectify than research outlay.

However, healthcare researchers in particular face a challenge. Patients often don’t want to divulge information about their health status and vulnerable patients must be protected. Regulations surrounding patient data often stop researchers from obtaining the information that they want. Meanwhile hard-to-reach groups – those who are not heard and those that do not want to be heard – can prevent a complete picture from forming, and leave further knowledge gaps.
These should not be seen as barriers to successful research, but as catalysts for innovative research methods that produce equally valuable results. Insight can be obtained in a number of ways. Whilst ‘big data’ may be the most talked about method of the moment, it’s not always necessary or worth the expense, and it can be difficult to apply its findings on a personal level. Data can be unreliable, and is always contextual. It is good at the ‘what’ and ‘how’ but not very good at the all-important ‘why’. The beauty of tailored research is that it’s flexible and adaptable to specific needs, such as circumventing language barriers for non-English speaking patients, and in this manner can bring the public closer to the resulting decisions.

Research methods
Focusing on a streamlined method and explicit goals is of mutual benefit to both research providers and commissioners. Such research might reveal unexpected results and change the course of action, or it could confirm an intuitive response – what is most important is that it provides evidence that guides confident, positive change based on real responses.
Across the healthcare sector it is vital that those commissioning research are aware of the variety of methods available. It is important to choose a supplier who will prescribe the best-fitting research approach – one that complements the research aims and can take into account methodological restrictions. For example, a quantitative approach could work on a larger scale with issues that are less sensitive, giving a broader insight, whereas qualitative research works well with matters that are more personal, such as patient engagement, and can bring about more detailed results.   

Analysing research
The analysis that follows research is just as important as the methodology used to obtain it. Qualified professionals can ascertain more than just the facts from research. Understanding the ‘why’ and not just the ‘what’ drives better communication between the public and the healthcare provider, and enables professionals to understand the impact of a treatment on a personal level. The positive value of placebo is recognised, but it does depend on confidence which is an emotional state based on trust. By defining what a person values in their care it is possible to prioritise resources and save elsewhere.
Research conducted in this sector must be fit for purpose not only methodologically but from legal and ethical standpoints too. The Market Research Society (MRS) Code of Conduct is set out with this in mind. It is regularly updated to cover the inception, design, execution and use of good research, and following these regulations preserves standards while promoting confidence in data. Proven methodologies and legal and ethical frameworks should underpin all professional research and will ensure best results while protecting providers, buyers and respondents.
The NHS’s data sharing scheme could be an invaluable resource; using information about actual patient care will enable improvements to treatments and allow the organisation to better gauge performance. However, it must take very careful steps to ensure that the data is not misused. A Global Research Business Network study from February showed that 76 per cent of people considered their health records to be sensitive data – this should be a priority consideration for the NHS as it moves to implement the scheme later this year.
The responsibility for gaining public trust lies with the organisation, and concern regarding the safety of personal information could be reined in if certain data protection strategies are put in place. The Fair Data trust mark, launched by MRS last year, sets out 10 core principles on the fair collection and use of data. By committing to these, the NHS would go a long way to restoring trust in its approaches to research and data handling and open the door to wider research participation.

Case study: Keeping relevant and adding value

By Andy Cumming, research director, Join the Dots

The value of research has always been recognised in the world of consumer healthcare and the role that online communities can play in that is without doubt. However, it’s important if we are to stay relevant within this category that we move with the times, responding to and pre-empting the challenges of increased globalisation and regulation. The need for almost instant results has caused consumer healthcare companies to refine their approach.
    We evolved our methods through our work with GSK Consumer Healthcare (GSK CH). When we started working with GSK CH it was clear that it wanted to get closer to customers and bring them into the heart of decision making. But to do this successfully GSK CH needed research quickly, in multiple countries, and in different languages. This was a challenge that we wanted to respond to.

Customer value
If researchers really want to add value to customers, they need to ensure that they explore and understand the bigger picture. For GSK CH this was about providing insight at any time, in any place, which was actionable and would drive successful innovation, design and communication. The bigger picture is about knowledge and insight being a fluid, mercurial commodity, not a fixed report or point in time. It was using this premise that we developed the concept of a consumer knowledge hub.  It’s much more than an online community – a hub is a store of insight that we then overlay with consumer trends and cultural understanding. When you have a complex business such as GSK CH the flexibility of your knowledge is paramount to research success.
Health Hub
With this in mind, we launched the ‘Health Hub’. Treating it like a flexible pool of knowledge, which brings together different parts of the business, GSK CH can dip into the Health Hub in different ways; it can channel information towards different business problems simultaneously, and run longitudinal studies over a number of months while still getting the answer to that tactical research question in a local market. The flexibility and scope of this pool of knowledge provides customer closeness which allows GSK CH to make smarter, more commercial business decisions in response to real patient needs. The world of consumer healthcare demands this.

The Health Hub spans 10 countries and has over 8000 members, but its strength as a consumer knowledge base comes from four crucial elements:
•    A commitment by GSK CH to listen to the community;
•    An assurance from Join the Dots that the community membership is right and that we have the right reach. We also need to be able to access these members quickly;
•    The use of local moderators to ensure cultural and linguistic fluency;
•    The curation of knowledge, to add value and understand what is going to be important to your customer.

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