HEQ spoke to Dr Neda Milevska-Kostova, chair of the International Alliance of Patients’ Organizations (IAPO) and chair a.i. of the AMR Patient Alliance about the importance of adopting an individualised approach to care and how this could shape greater public understanding and awareness of resistance to antibiotics.
Advocating greater focus on an individual’s particular healthcare needs can offer many benefits in terms of the quality of care they receive, especially with the burden of resistance to antibiotics. Not only can it improve communication between physician and patient – potentially leading to better clinical outcomes – but it also yields economic, social, and clinical gains for healthcare systems through improved allocation of resources, staff productivity and morale, support, and treatment planning.
With the primary aim of promoting patient-centred healthcare worldwide, the International Alliance of Patients’ Organisations (IAPO) works collaboratively with policymakers, the healthcare sector, academics, researchers, and industry representatives to influence health agendas and policies at international, national, and regional levels.
Why is a patient-centred approach in healthcare so important?
A patient-centred, or person-centred approach is really critical. When we consider clinical guidelines, there is a standardised approach for diseases, which is usually applicable to about 90% of patients but would not, due to personal characteristics, support the remaining 10%. This is really an admission by the healthcare system that an individualised approach is something that we need. That is not to say that the majority of patients do not need a personalised approach, it is simply that there are many similarities between those patients that the fine-tuning of the approach is really minimal.
On the one hand, we need generalised approaches to care because patterns can be very similar for diseases and many comorbidities. However, these similarities can only be acknowledged to a certain level and beyond that, we need a more personalised approach. Of course, the healthcare system cannot be designed around one person, but as an example, a patient with diabetes and a broken leg would require a different care pathway than one who is only presenting with a fracture. Personalisation is really about considering all the determinants or characteristics of the patient that might help address their specific medical situation properly and ultimately improve their health and quality of life. We need to approach care from an individual level, but also from the individual facility level and this entails a checklist of the different parameters that can affect a specific patient.
Patient-centred care also advocates greater communication between physician and patient and while we need to empower patients, there is a very fine line between them participating in the decision making around their treatment and making them believe they possess greater expertise in a certain field than the healthcare provider. It is a balance whereby the healthcare provider brings their medical knowledge, and the patient feels confident to voice their personal observations about their health. The benefit of having patient organisations is that they can act as a conveyance of the message that the healthcare system really does exist for us, but we need to support it with our own perspective so that both healthcare systems and the individual can benefit. Of course, the discourse around and approach to different health conditions can vary greatly. For instance, when we talk about resistance to antibiotics, we really need to find a way to address it at both the individual level and the broader population level and use the power of the patient organisations to advocate for change.
What opportunities does a patient-centred approach present in terms of care and wider public understanding of resistance to antibiotics?
Changing our individual approach to antibiotics requires behaviour change and a change in culture. We cannot do this by simply introducing laws because enforcement without health literacy, education and awareness-raising activities would still lead to avoidance and non-adherence, especially in countries where law enforcement is very difficult. However, what we can do is encourage countries to recognise the lessons learned and expertise of those countries that have already gone through similar situations. We can point to and work on good examples in terms of economic and societal gains long term as a way of showcasing the benefits of today’s actions for future generations. But we also need to work on an individual level. When any person is sick, all they want is to get better, and antibiotics are not always the answer. During the pandemic, we have evidenced that over three-quarters of patients have been taking antibiotics for a viral infection. We need to think of ways to provide greater support, especially at the onset of disease by ensuring patients’ access to sufficient information and understanding of their situation, such as through a healthcare advisor who would regularly be in contact and help the patient make the right decisions. Another possible answer is patient guidelines, especially guidelines that support the patient step by step, and can help them understand their symptoms and how they should react and record their observations to facilitate optimal communication with their healthcare provider. Essentially, patient guidelines are a mirror of the clinical guidelines that tell the patient what to pay attention to in particular, why something is happening in lay words and can answer common questions that they may have. Many sepsis patients have been saved simply because they felt more aware and were able to query the doctor’s diagnosis based on their observations. That is the purpose of patient guidelines, to handhold patients through periods where they do not always need antibiotics, and to enable them to share their observations in a structured way.
It is fair to say that the mindset of a healthy person is different from someone who is unwell, and this is where communication around resistance to antibiotics needs to be addressed. Awareness-raising campaigns around antibiotic use are brilliant but the way these will be interpreted by a healthy person and someone who is unwell can be very different because typically the person who is unwell just wants to get better as soon as possible. Therefore, the messaging around resistance to antibiotics must be more personalised and tangible because, at present, people may not give much thought to how antibiotic use may affect their care in the future. If we told people that, for example taking too many antibiotics depletes the capacity of their liver to process the medicines and could affect their chances of receiving vital surgery in later life, or that antibiotics alter the gut microbiome which affects their capacity for immune response, that might be more effective in changing people’s behaviour and perceptions around antibiotics.
At the same time, we need to try and provide more space for healthcare providers to support patients so that in situations where they do not need to take antibiotics, they do not take them. Healthcare providers may sometimes not feel confident in their ability to properly transmit messages and their knowledge of resistance to antibiotics to patients in a way that is easily understandable yet reassures the patient that it is the right thing to do (or not do, such as when antibiotics are not needed). This is where transforming the antibiotic resistance concept from something which is very theoretical and abstract to something that is more familiar, tangible and can be connected to one’s everyday life and routine can be really beneficial.
Patients self-medicating and doctors facing safety concerns or diagnostic uncertainty are some of the reasons contributing to the antibiotic resistance crisis. We need to address resistance to antibiotics at the individual level as hard as it sounds, as we have seen the benefits of this in other areas of care such as individual cancer screenings. Antibiotic resistance campaigns raise awareness on a mass scale but what we need to do is address the issue at the individual level as we do with individual screenings for chronic diseases. This means providing a more substantive and almost a hand-holding approach to antimicrobial resistance at the patient level.
How would you say the COVID-19 pandemic has impacted awareness around infection prevention and control?
People were not wholly aware of the impact of infection prevention, especially in the developed world where infections occur sparsely and not at endemic levels. However, particularly in developing countries, due to the lack of resources or education infections become more difficult to prevent. I do think that the COVID-19 pandemic has encouraged all countries to improve their understanding and awareness of infection prevention and control. However, the way the issue of infection was framed was a key factor affecting people’s understanding; wearing masks, washing hands, and keeping distance were repeatedly presented in the media as limiting our freedoms. While that to some extent has been true, it would have helped if the messages were providing more narrative towards improving health literacy and understanding of medical and not only societal impact of these preventive and public health measures.
Tackling resistance to antibiotics takes a global effort, how can regulatory guidance around and access to new antimicrobial therapies, diagnostic tests, and even infrastructure
One approach cannot fit all, we can try to provide many tools, but what we need is to go down to facility level and, when it comes to the patients, adopt an individualised approach. This is a difficult task, especially with the transitory nature of infections. If, for example, you have a patient with a history of colon cancer, it is likely they will be keen to attend screenings every five years, change their lifestyle, and so on. But this is not the same with infections; they can be unexpected, and one can never be prepared enough. Furthermore, when the infection has resolved, it is already considered an issue of the past. So, it is very difficult to put enormous levels of effort into supporting every individual patient. The aforementioned clinical guidelines might therefore be a starting point to developing a standardised approach that can then be tailored to the local needs of each facility. As a common practice, every hospital aspiring to excel in healthcare has to convert the national or global guidelines to local guidelines. The same should stand for patient guidelines; if they are interested in treating every individual patient without, for example, having a nurse monitor a patient for 24 hours, which is far more expensive, then they have to produce their own local guidelines based on regional or global guidelines that serve as the gold standard for patients. It is not possible to provide patient guidelines suited to all the hospitals or disease areas, but they have to be adapted to the local context based on something that we, as the patient community, should develop.
However, there is still a huge inequality regarding the access and availability of antibiotics. The landscape is so diverse, there are places where there are no antibiotics available and in contrast, places where there is an abundance. Likewise, there are places where antibiotics are regulated fully and those that have no regulation whatsoever. Even if we put aside self-medication, this entire diversity of what is and what is not available is also causing inappropriate use at the provider level; we are now developing a repository of different guidelines by means of trying to standardise what is the minimum protocol for a hospital should follow if they have limited resources or no resources. The diversity we are seeing across countries is huge. There are so many factors influencing antibiotic use, and we cannot address them all but what we can do is try to adapt the practices to whatever is available.
But in any case, the main take-away message is that resistance to antibiotics is an ongoing pandemic and an already visible serious threat to public health and to modern medicine, that if we want to address, we need to make a paradigm shift, whereby patients, together with healthcare providers and political support can play a major role. Einstein said that we cannot expect different results if we do the same things over and over again; we have to rethink approaches and efforts to ensure that we preserve the efficacy of antibiotics for as long as possible and for as many patients as possible.
Dr Neda Milevska-Kostova
International Alliance of Patients’ Organizations
This article is from issue 21 of Health Europa Quarterly. Click here to get your free subscription today.