Diabetes, asthma, heart failure – the number of people living with common long-term illnesses is on the rise. Many of these patients are at higher risk of catching infectious diseases and face a higher chance of complications from flu or pneumonia.
However, all too often, conversations take place about patients without patients. That is beginning to change as leading patient groups speak up about the need for patients to protect themselves. In the process, they can help to identify barriers to vaccine uptake among specific at-risk groups.
‘Patients are an important group for several reasons,’ says Kaisa Immonen, Director of Policy, European Patients’ Forum (EPF). ‘Firstly, infectious diseases can be more dang erous for patients with chronic health conditions. Secondly, specific vaccination recommendations exist for many conditions in national immunisation programmes, but uptake of vaccination by patients is lower than it could be.’
Other vulnerable patient groups are also at risk either because immune systems are weak or they are taking immune-suppressant medications to address another health problem. ‘Some patients such as those with autoimmune conditions or organ transplants, cannot be vaccinated at all, so they depend even more than other people on effective community (herd) immunity and suffer from falling rates of vaccination in the general population.’
The EPF has conducted a short survey of its membership on vaccination to explore awareness and attitudes to immunisation. Kaisa says the results point to a range of issues that should be addressed: ‘Patients’ lack of awareness of the specific recommendations for them; vaccination not being integrated as part of the treatment pathway; some degree of hesitancy in the patient community; and practical access barriers which include easy availability and cost.’
The organisation has published a manifesto on the importance of vaccination for patients with chronic conditions. It calls for actions to improve patients’ access to vaccination as well as better information and awareness. ‘Vaccination should be included as a part of chronic disease management plans and clinical guidelines, and professionals should routinely check their adult patients’ vaccination status and offer vaccination,’ says Kaisa.
Read the full interview with Kaisa Immonen, Director of Policy, European Patients’ Forum (EPF)
Why has EPF launched an initiative on vaccination?
Vaccination has emerged as a specific health policy priority at European level; Commission President Juncker identified equal access to vaccination as a priority in his 2017 State of the European Union address, and in 2018 various initiatives were launched, including a European Commission Communication, a Council recommendation, and a European Parliament own-initiative resolution – complementing efforts by WHO and ECDC, among others.
EPF is supportive of these initiatives, which include developing evidence-based information for citizens and fostering collaboration with civil society to promote immunisation. Our own initiative focuses on the specific role of patient organisations that can complement and support these wider public health efforts.
The EU taking several measures to address vaccine uptake. Are you involved in any of these?
EPF is a stakeholder partner in the Joint Action on Vaccination (EU-JAV). In addition, we aim to work closely with the organisations representing healthcare professionals and students in identifying opportunities for collaboration.
Your focus is on people living with chronic diseases – why are they a key target group?
Patients are an important group for several reasons. Firstly, infectious diseases can be more dangerous for patients with chronic health conditions. Secondly, specific vaccination recommendations exist for many conditions in national immunisation programmes, but uptake of vaccination by patients is lower than it could be.
Finally, some patients such as those with autoimmune conditions or organ transplants, cannot be vaccinated at all, so they depend even more than other people on effective community (herd) immunity and suffer from falling rates of vaccination in the general population.
For some diseases, such as flu, people with chronic diseases are a priority risk group but vaccine uptake is low. Why do you think this is?
The results of our short membership survey, though only indicative, point to several possible factors: patients’ lack of awareness of the specific recommendations for them; vaccination not being integrated as part of the treatment pathway; some degree of hesitancy in the patient community; and practical access barriers which include easy availability and cost. Of course, these factors vary depending on the condition and the healthcare system.
What were the key findings of the survey you conducted among your members on vaccination and the need for more information?
We found that patients consider healthcare professionals (mainly doctors, nurses, pharmacists) as key providers of information and generally trust them. However, they feel they do not always get enough information on vaccination from healthcare professionals, and sometimes the information is contradictory. Professionals’ attitudes appear to be a very important influence on patients’ attitudes towards vaccination.
Patients also look at media, both traditional and online/social media, for information. Many said there is not enough – or easy-to-find and understandable – information on vaccination for specific health conditions. Patients also wanted to know more about the benefits and risks of vaccination specifically for them, i.e. understanding the benefit/risk of a vaccine in their personal context. And many said there is not enough information on the risks of not being vaccinated.
Radu Costin Ganescu, President of COPAC and Vice-President of EPF, speaking at a workshop in Bucharest. Photo credit: COPAC
EPF hosted a workshop last year. What was the main outcome and what will happen next?
We held a joint workshop in November 2018 in Bucharest with our Romanian member organisation, the national coalition of patient organisations, COPAC. This workshop brought together around 40 patient representatives and a number of other key stakeholders.
The discussions identified a number of factors behind the low uptake of vaccination in the country, including lack of accessible, accurate and evidence-based information, lack of funding for adult vaccination programme, difficulties in accessing vaccination in practical terms, lack of supplies, and lack of training of professionals.
In 2019 the two organisations will again join forces to organise a follow-up meeting, this time in Cluj, to formulate effective actions to start addressing those factors.
In February, EPF published a manifesto – what is the take-home message?
The EPF Manifesto on the importance of vaccination for patients with chronic conditions calls for actions to improve patients’ access to vaccination as well as better information and awareness. Vaccination should be included as a part of chronic disease management plans and clinical guidelines, and professionals should routinely check their adult patients’ vaccination status and offer vaccination.
Other key points are tackling low uptake of vaccination among healthcare professionals, removing barriers to patients’ access to vaccination, such as availability and cost, and encouraging national authorities to work with patient organisations when formulating public information and engagement strategies.