Over the past 2 years there has been an unprecedented increase in medical research, the NHS has been under enormous pressure, and the UK public has become progressively more aware of science and research in response to COVID-19. Research data and information have been generated and published faster than ever before, creating new challenges for the National Institute for Health and Care Excellence (NICE), which has been at the forefront of providing medical guidance for over 20 years. Moving beyond the COVID-19 era, NICE is reassessing and reprioritising its focus to ensure that it provides the best guidance in the areas that will provide the greatest benefit to patients.
At the time of writing, there are 2142 pieces of guidance on the NICE dashboard. This overabundance of information is difficult for clinicians and stakeholders to use, particularly when new evidence is being produced. Guidelines often compete with each other, are too confusing, and become rapidly out of date.
Patients play a huge part in the generation of life-saving research and need to be involved from the very beginning. Understanding people's attitudes to health and medicine is important, as seen with the anti-vaccine movement, so perhaps qualitative research should be valued as much as quantitative research. Understanding why people refuse vaccines and where those fears come from is important, as is education for people about science and research. Without public willingness to engage with treatments, therapies, and prevention methods, successful improvement in public health will be hindered. Patients must be seen as people with lived human experiences.
NICE has launched a project called NICE Listens, which aims to ensure that their policies reflect public opinion, particularly when thinking about potential trade-offs. The first focus of the project was health inequalities, spread across four online workshops involving 25 people sampled across age, gender, ethnicity, location, household income, and various other factors. The group debated the social, ethical, and moral issues surrounding health inequalities to understand how people feel about these issues. This first report from the NICE Listens initiative is due to be published within the next few months.
The scientific landscape is everchanging and the need for flexible and up-to-date guidance is crucial. NICE is moving towards a living guideline model that responds to emerging research and is useful, usable, and used. There are four key aims, the first being to implement a focused guideline portfolio. With so many guidelines, NICE aims to focus on high-priority areas and create connected suites of guidelines. The hope is that this will make it easier for clinicians and key stakeholders to find the answers they're looking for. These will be implemented by rolling topic committees, able to update guidance flexibly and quickly. The second aim is to create a digital guidelines platform, which makes using the recommendations easy. Guidance needs to be more structured (ie, easy for machines to read), which requires clear coding and structures and a digital-first approach. Once guidelines are in place, NICE can work with its partners to integrate guidance into decision support tools that are embedded in the workflows of clinicians.
The third aim is to implement new mechanisms to provide feedback. NICE wants to introduce a model whereby its guidelines are embedded into a decision support system that is linked to electronic medical records. Consequently, the impact of guideline uptake can be monitored leading to more informed future strategies. The fourth aim is to have an updated manual that reflects data use and the inclusion of technologies in guideline development. Machine learning is scanning between 2000 and 3000 new records each week. Yet NICE is still keeping to its standards of robust, rigorous, and independent guidance.
Guideline implementation is another crucial step. The UK has a poor track record of getting new innovations to patients and inadequate implementation often contributes to health inequalities. Matching the speed of developing innovations with the speed of implementation is challenging, particularly with large target populations.
Potential challenges to implementation should be considered when guidelines are being developed. Patients are often asked for their approval at the end of the process, when it is too late, so allowing people to connect with the outcome from the very beginning is what's going to prevent innovations from being discarded at the last minute. The integration of new innovations into current services needs to be thought out, as do the implications for the system as a whole. New policies could disrupt policies in other areas and when patients are waiting in excess of a year for treatment, they cannot afford to wait longer.
Moving forward, there must first be a need for guidance. Attention should focus on what doesn't work and where research can provide an answer. The number of guidelines needs to be reduced and converted into actionable decisions. The cost effect of new innovations should also be considered, which is currently missing in guidance, as this frequently prevents uptake. Often, investments in technology or interventions have had no meaningful clinical impact and, in some cases, have caused harm. Guidelines must be able to respond to new information and be usable, considering stakeholder preferences. Building a trusting relationship between medicine and the public is crucial, with patients and the public in the driving seat.
Priorities for NICE in Health and Social Care Conference. Feb 28, 2022. Online. Westminster Health Forum.
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