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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*, according to a report launched today.
The new report highlights the significant difficulties patients and some healthcare professionals face in using evidence from research to judge the benefits and harms of medicines, and calls for concerted action to improve the information patients receive.
The report was instigated following public debate around the benefits and harms of treatments such as statins, hormone replacement therapy and Tamiflu. It calls for a range of actions including significant improvements to patient information leaflets, better use of medical appointments and a bigger role for NHS Choices as the ‘go to’ source of trusted information online for patients and carers, as well as healthcare professionals.
Report Chair, Professor Sir John Tooke FMedSci, said:
“It is startling to hear that only about a third of the public trust medical research, and that patients are struggling to make sense of the information they receive from their doctor, the TV, the internet and their friends and family about medicines.
“With our ageing population and ever more sophisticated treatments being made available, we need to act now to give patients clearer and more useful information about the medicines they take.”
Patient information leaflets, found inside the packets of all medicines, were described by the public as being ‘impenetrable’ and ‘unreadable’ and the new report calls for substantial changes to the leaflets at a national and EU level.
The report calls on the European Commission and the European Medicines Agency (EMA)** to work with national regulatory authorities, pharmaceutical companies and patients to reform patient information leaflets to give a clearer and more balanced summary of both the potential benefits and harms of medicines. At present, patient information leaflets detail all of the possible side effects but are particularly poor at outlining the potential benefits of treatments, hindering informed decisions about medicines.
The new report also urges the public and medical professionals to make better use of medical appointments, and launches a set of questions*** for patients to discuss with their doctor to help them make better informed decisions about whether to take a medicine. Active involvement in decision making about their own health has been shown to improve outcomes for patients. The report also recommends that some patients taking multiple medications for long term conditions will need longer appointments with health professionals to make informed decisions.
With the ever-increasing volume of information available online, the report also recommends that NHS choices should be built into a trusted ‘go to’ source of online information for patients and health professionals, providing clear, accurate, up-to-date, evidence-based information about medicines.
The new report summarises data from surveys* of 1,013 GPs and 2,041 British adults, information from deliberative public dialogue workshops in Glasgow, Leeds and London, written and oral evidence received from a large number of individuals and stakeholders, including leading researchers, charities and research funders, and a series of workshops with experts on topics such as the way in which scientific evidence is generated and communicated.
In dialogue to inform the report, patients described struggling to filter information from different sources, such as the internet, newspapers and family and friends.
Implementing the changes recommended in the report could help avoid future confusion about the benefits and harms of medicines, such as arose in the past around statins to prevent cardiovascular disease, hormone replacement therapy (HRT) to treat the symptoms of the menopause and Tamiflu to treat flu.
Controversies about medicines can have an impact on healthcare, for example, questions raised about the risk-benefit balance for statins was associated with a greater number of people stopping treatment causing an estimated 2,000 excess cardiovascular disease events, such as heart attacks and strokes, over the next ten years in the UK.****
Professor Sir John Tooke, concluded:
“We all need to make decisions about medicines at some time in our lives, and this should involve the opportunity to consider which treatment will meet our individual needs. While many factors will affect our decision making, we would like robust evidence from scientific research to play a more important role. For this to happen, information from research will need to be more accessible and understandable, as well as reliable and trustworthy in the future.”
“We will only succeed in making the most of the tremendous strides in medical science if we are also able to share knowledge effectively with patients to allow them to make the best decisions about medicines.”
Professor Dame Sally Davies DBE FRS FMedSci, Chief Medical Officer for England, said:
“Medical science is progressing at an unprecedented rate, opening up opportunities not only to cure certain diseases, but potentially to prevent them from ever occurring. Yet it is vital that we find the best possible ways to use and communicate scientific evidence, so that progress may be translated into benefits for patients.”
Silvia Kirk, mum of two who participated in the Academy’s ‘Best Evidence’ public dialogue programme said:
“I’ve often left my doctor’s surgery with a prescription unsure why I needed the medicine, how it would make me feel and exactly when I should take it. This has left me confused about why the medicine is important for my health and unprepared for any side effects. It is really hard to think of the right questions to ask in an appointment, especially as you usually visit the doctor when you aren’t feeling well.
“Since attending the public workshops for this project I do ask more questions. I am more confident to ask if there are ways I could deal with my condition without talking medication, and I have used the Yellow Card Scheme to check if there have been recent adverse reactions reported about a medicine. I also feel more confident in asking the doctor to print off information for me about what they have diagnosed or prescribed. With this new knowledge and confidence I feel I have been able to make better decisions about medicines for myself and my children.”
For more information, please contact Naomi Clarke (Naomi.Clarke@acmedsci.ac.uk; 020 3141 3208).
* ComRes interviewed 2,041 members of the British public online between 18 and 20 March 2016 in the UK, and 1,013 GPs online between 16 and 26 March 2016. General public data were weighted to be nationally representative of all British adults aged 18+, by age, gender, region and socioeconomic group. GP data were representative by former Strategic Health Authority (SHA) region. At launch, a summary of the results will be available at: http://www.acmedsci.ac.uk/evidence/survey. Full data tables will also be available at: http://www.comresglobal.com. ComRes is a member of the British Polling Council and abides by its rules.
** The report notes that while the UK leaving Europe presents an opportunity to improve information leaflets for patients in the UK, the size of the UK drug market means that the UK would still benefit from adhering to harmonised criteria across the EU, so it would be necessary to make changes at an EU level.
*** The Academy has developed a short list of questions to help patients make decisions about medicines that are right for them and their family. The list is not exhaustive nor are patients expected to ask all of the questions. They are designed to enable patients and their healthcare professional discuss the evidence behind their treatment options together. Before seeing their healthcare professional, patients and carers should ask themselves:
- What health goals are most important to me?
- What are my expectations of treatment and which of the following questions will help me find out how this medicine can fulfil them?
Questions to ask during the consultation are then grouped under the following four categories:
- Is this medicine right for me?
- What are the potential benefits and risks of this medicine?
- How will this medicine make me feel?
- How should I take this medicine?
**** Matthews A, et al. (2016). Impact of statin related media coverage on use of statins: interrupted time series analysis with UK primary care data. BMJ 353, i3283.
Notes to editors
Arthritis Research UK, the British Heart Foundation, the British Pharmacological Society, the British Society for Immunology, the Medical Research Council, the Naji Foundation and the National Institute of Health Research Health Technology Assessment Programme provided financial contributions towards this project. Funding from a core grant from the Department for Business, Energy and Industrial Strategy to the Academy was also used to support this project.