Laura Machado discusses clinical trials and how the DECIDE project at the University of Aberdeen aims to make information more widely available. To find out about how to test medicines and explore the fascinating secrets of the NHS Grampian archives join us from 2pm on EXPLORATHON on the 25 September in the main entrance foyer at Union Square in Aberdeen. This blog is taken from the EXPLORATHON magazine which you can read in full online or pick up a copy on the night of EXPLORATHON!
We all rely on medicine – from the ibuprofen you take on a rough morning to the anti-allergenic that inhabits the kitchen cupboard when the pollen season arrives. This is how clinical trials pervade every aspect of modern medicine, but have you ever thought about the process behind getting safe and effective drugs from a laboratory to your medicine cabinet?
Only when drugs have proven to be safe they are released into the market. Nevertheless, despite being at the heart of clinical practice, clinical trials remain a mystery to many. Although the importance of clinical trials is undeniable, there is a huge gap in public knowledge about the different stages and rationale behind them. Perhaps the input from patients and the public in general has been underestimated: it is their personal experiences with particular illnesses that actually make them a crucial pillar in trial design to make it pertinent. For example, in a trial evaluating medicine for diabetes, “What is it like to suffer from diabetes?”, “What is it like to take care of someone suffering from diabetes?” are questions that need input from experts, and those experts are the public and the patients, not the trial designers.
The main reason, however, of why trials lack participation is that they might appear risky; the idea of being an experimental guinea pig is daunting to most. Conversely, evidence shows that people in a trial receive a quality of care that is, at least as good, if not better, than that of people receiving treatment through routine clinical practice, as explained by Professor Shaun Treweek, of the Health Services Research Unit at the University of Aberdeen. Much of the apparent riskiness stems from the fact that these risks, however small, are made explicit by the trial staff. On the other hand, information provided in routine care can be much less overt in presenting the potential side effects of treatment. Professor Treweek explains, “I can understand why people might think that risk is a problem in trials but the same risks often exist in routine care – although they might not be made as obvious as they are within a trial”.
Parallel to his work on improving clinical trials, Professor Treweek is involved in the DECIDE project. This project aims to tackle a common problem in modern medicine: how routine care is frequently a one-sided affair between patient and doctor. As patients we might look on the internet for information but it is often unreliable, vague and sometimes contradictory. Therefore, health professionals still hold a gate-keeping role to treatments and reliable information based on their expertise and guidelines.
Indeed, in many consultations, the patient’s input is usually minimal–albeit with a few exceptions–as reading scientific papers can be quite tricky for non-specialists. This is where the DECIDE project, which Professor Treweek is involved in, enters the scene.
The DECIDE project seeks to summarise research information. This will allow people to make educated healthcare decisions in synergy with a medical professional. The aim is to design a platform in order to help people access healthcare information that is more targeted at them, but which is still based on well-monitored guidelines and up-to-date research.
DECIDE is an international effort, with the focus of work varying between countries. Researchers in Norway, for example, have linked electronic medical record systems to online guidelines. This allows health professionals to link the two during consultations with patients. Scotland’s own wide use of electronic medical records means it is possible to imagine discussing treatments with concise, clear information based on your own medical history together with your GP. Now it is not so difficult to imagine a better, more efficient, evidence-informed healthcare system that excels not only in its treatments but also in the way they are discussed and delivered.
We all rely on medicine – from the ibuprofen you take on a rough morning to the anti-allergenic that inhabits the kitchen cupboard when the pollen season arrives. This is how clinical trials pervade every aspect of modern medicine, but have you ever thought about the process behind getting safe and effective drugs from a laboratory to your medicine cabinet?
Only when drugs have proven to be safe they are released into the market. Nevertheless, despite being at the heart of clinical practice, clinical trials remain a mystery to many. Although the importance of clinical trials is undeniable, there is a huge gap in public knowledge about the different stages and rationale behind them. Perhaps the input from patients and the public in general has been underestimated: it is their personal experiences with particular illnesses that actually make them a crucial pillar in trial design to make it pertinent. For example, in a trial evaluating medicine for diabetes, “What is it like to suffer from diabetes?”, “What is it like to take care of someone suffering from diabetes?” are questions that need input from experts, and those experts are the public and the patients, not the trial designers.
The main reason, however, of why trials lack participation is that they might appear risky; the idea of being an experimental guinea pig is daunting to most. Conversely, evidence shows that people in a trial receive a quality of care that is, at least as good, if not better, than that of people receiving treatment through routine clinical practice, as explained by Professor Shaun Treweek, of the Health Services Research Unit at the University of Aberdeen. Much of the apparent riskiness stems from the fact that these risks, however small, are made explicit by the trial staff. On the other hand, information provided in routine care can be much less overt in presenting the potential side effects of treatment. Professor Treweek explains, “I can understand why people might think that risk is a problem in trials but the same risks often exist in routine care – although they might not be made as obvious as they are within a trial”.
Parallel to his work on improving clinical trials, Professor Treweek is involved in the DECIDE project. This project aims to tackle a common problem in modern medicine: how routine care is frequently a one-sided affair between patient and doctor. As patients we might look on the internet for information but it is often unreliable, vague and sometimes contradictory. Therefore, health professionals still hold a gate-keeping role to treatments and reliable information based on their expertise and guidelines.
Indeed, in many consultations, the patient’s input is usually minimal–albeit with a few exceptions–as reading scientific papers can be quite tricky for non-specialists. This is where the DECIDE project, which Professor Treweek is involved in, enters the scene.
The DECIDE project seeks to summarise research information. This will allow people to make educated healthcare decisions in synergy with a medical professional. The aim is to design a platform in order to help people access healthcare information that is more targeted at them, but which is still based on well-monitored guidelines and up-to-date research.
DECIDE is an international effort, with the focus of work varying between countries. Researchers in Norway, for example, have linked electronic medical record systems to online guidelines. This allows health professionals to link the two during consultations with patients. Scotland’s own wide use of electronic medical records means it is possible to imagine discussing treatments with concise, clear information based on your own medical history together with your GP. Now it is not so difficult to imagine a better, more efficient, evidence-informed healthcare system that excels not only in its treatments but also in the way they are discussed and delivered.
No comments:
Post a Comment