19 July 2017
Professor Sir John Tooke reflects on the Academy of Medical Sciences’ latest policy report on the use of scientific evidence, which he chaired.
High-quality scientific evidence should be at the heart of decisions about medicines
The Academy of Medical Sciences strongly believes that high-quality scientific evidence should be at the heart of decisions about medicines. This may sound obvious, as good scientific evidence is the only source of information about medicines that is subject to rigorous checks and balances, yet only about a third (37%) of the public trust evidence from medical research, compared to approximately two-thirds (65%) who trust the experiences of their friends and family. This startling figure comes from a survey of 2,041 British adults, commissioned to inform the Academy’s most recent report that we launched on 20th June.
The Academy’s new report, ‘Enhancing the use of scientific evidence to judge the potential benefits and harms of medicines’, was instigated following public debates about controversial treatments such as statins, Tamiflu and hormone replacement therapy.
The development of the report was an in-depth investigation stretching over two years, beginning in 2015 with a review into how evidence is generated. The oversight group that I chaired was tasked with bringing together the parallel strands of the project, including work around the generation, communication and trustworthiness of scientific evidence. With considerable input from the public, patients, doctors, scientists, science communicators and industry, we have developed a series of 12 recommendations for different stakeholders and groups on how to make sure medical research is robust, relevant and trustworthy, and that the evidence generated is useful and accessible to doctors, patients and the public.
Implications for researchers
Within the research community, we are concerned about the bias towards publishing positive results. We want researchers and journals to commit to publishing the results of good quality research whatever the results. We also want patients, carers and the public to be more closely involved in research to make sure new medicines are developed with their needs in mind. Researchers and healthcare professionals also need to receive adequate training in research methods and statistics so that they can apply these, or the findings from relevant research, appropriately to their work.
Drug companies are particularly mistrusted by the public. However, without industry involvement it is much less likely a new medicine will reach patients. It’s important that there are strong, transparent and ethical links between universities, the medical profession and pharmaceutical companies – and it’s important that scientists are open about, and are able to communicate the value of, these links. We have created a set of principles to govern such relationships and urge the scientific community to work together to ensure these are implemented. There should, however, be greater openness about all interests – not just links with industry – and their management, and we call for appropriate frameworks for declaring and managing interests to be established.
The Research Excellence Framework (REF) can play a key role in driving a culture change within higher education institutions. We are asking that the next REF exercise takes into account the robustness of research, the openness of scientists and the way research results are explained to the public. It should reward efforts to improve these features.
Implications for patients and healthcare professionals
To make scientific evidence more accessible, assessable and usable for patients, doctors, nurses and pharmacists we call for patient information leaflets, described as ‘impenetrable’ and ‘unreadable’ by the public, to be made simpler and clearer, and to contain a balanced appraisal of both the benefits and harms of the medicine. In addition, we are asking for NHS Choices to become a ‘go to’ hub of clear and up-to-date information about medicines for patients and their healthcare professionals.
We also want to encourage doctors, nurses and pharmacists to involve patients more in decisions they make about medicines and treatment. We have created a set of questions that patients can take to their doctor to help them have sensible conversations about drugs. We have similarly developed questions for doctors to help them involve patients in decisions about their treatments.
With our aging population, an increasing number of patients are living with more than one long term condition. Healthcare professionals and patients would benefit from better decision aids to help them come to an informed joint decision about treatment options that are best suited to the patient. Longer consultation times may also be needed for patients with complex needs to ensure that their concerns and priorities are addressed.
Implications for communicators
To enhance the communication of scientific evidence, we believe researchers, research funders, universities and press officers should work together to help make sure that evidence about medicines is communicated accurately. We also believe that journalists should be aware of the potential impact on the public of the way they report health stories.
Journalists could be better supported to report the results from research more accurately by clear markers – such as a traffic light system – on health press releases. Training for journalists and their editors could also help, and good practice guidelines for scientists, press officers and journalists should be drawn up or better followed where they already exist.
Scientists’ involvement with industry is often used wrongly as a way to discredit scientific research. A scientist having links with industry doesn’t automatically mean the work they do is poor quality or unreliable. Journalists and others should ask not whether a link exists, but whether links with industry are getting in the way of good science.
Research has given us lots of new treatments. But we will only make the most of this progress when evidence about medicines is robust, trusted and can be communicated clearly. It is the responsibility of all scientists, doctors, patients and communicators to make improvements to the way we produce, use and communicate evidence about medicines.
Millions of people make decisions about medicines every day. We have all taken a medicine at some point in our life, many of us for long durations of time. We hope that this report will make some steps towards helping people make the best decisions about medicines for them.