Yearly Archives: 2018

What is special about the recommendations for patients and the Essencial project, one of the projects of the Agency for Health Quality and Assessment of Catalonia (AQuAS)?

There is a greater and greater demand to have access to clear and more readily understandable information in health by patients. There is a growing need, therefore, to provide this within a comprehensible format which includes the need to ensure that the medical message a patient receives is effective. This will in turn facilitate the conversation between both parts and will improve a patient’s understanding of their diseases, treatment options or possible side effects and will most likely also have an impact on empowering patients to be more actively involved in taking decisions related to their treatment.

The use of medical terminology is one of the factors, among others, which impedes an effective communication between professionals in health and patients. This could be due to a low level of understanding in health which we call “literacy” or perhaps as a result of the complexity of the specialised medical terminology itself which stems from a wide range of clinical specialities. These use specific terminology and we often find terms used in other fields of expertise such as pharmacy or biology.

It is most likely too that one of the reasons why medical information is not successfully transmitted is due to the amount of terminology found in a text which may not easily be understandable to the patient. Moreover, with the progress of medicine itself new terminology is constantly being introduced – some is modified and some terms are discarded. Therefore, the variation in terminology and the use of overlong sentences, the density of unexplained terminology, the use of acronyms, symbols or abbreviations are some of the barriers that complicate understanding.

The Essencial project, which has been drawing up recommendations to avoid unnecessary clinical practices for five years, started to adapt information for patients in 2014 and at present there are a total of twenty-two recommendations for patients available in Catalan and Spanish. These are a clear example of how medical terminology is adapted so that clinical recommendations can better be understood by patients and reach them effectively. For this reason, a process is followed to adapt the language to make a text easier to read and this also applies to its content, format and graphic images thus ensuring that documents for patients meet minimum reading requirements. The communication group of the Patient Advisory Council that designed the format of the documents and regularly validates the content also participates in this process.

The ultimate aim, therefore, is to make medical language more accessible to patients so that the message is effective bearing in mind the linguistic, cognitive and cultural barriers that may impede the information from being understood adequately.

Post written by Montse Moharra.

The XPatient Barcelona congress, which this year holds its 3^rd edition on September 20 in the CaixaForum Barcelona, concerns itself with innovative initiatives taking place in several contexts: in patient and caregiver empowerment, in the co-creation of healthcare with patients and in technology at the service of users. This has been done via a call for participation, or Call4Projects, which was open till last 25 June and received 73 projects, a figure considered a success in participation.

This event, organised by the technological centre Eurecat and the Hospital Clínic, together with the help of the XPA Barcelona community of practice (Patient Experience) – of which AQuAS has been a member since its beginning – has become the main meeting point in Catalonia for patients, family members and healthcare professionals as well as the different actors involved in healthcare. This is where they present and debate on the best initiatives for improving the quality of life of people and users, an area where technology plays a key role as facilitator of new models of healthcare.

In the words of the head eHealth at Eurecat, Felip Miralles, “we want an XPatient Barcelona congress which is increasingly more active, interactive and participative and which consolidates itself as ambassador for the best initiatives, methods and technologies having a focus and impact on improving patient experience.”

Joan Escarrabill, physician at the Hospital Clínic, points out that “the starting point to assess patient experience is to not make any assumptions” and stresses that “there are many strategies to identify the needs of patients and their caregivers which are not covered.”

The proposals selected from the participative process, Call4Projects, will be presented during the congress in September either in a speech or in the exhibition space at the event.

Post written by Eurecat (@Eurecat_news), Centre Tecnològic de Catalunya.

In recent years, the idea that the participation of the actors in research is a key element in research to transform and generate impact in society has been insisted on repeatedly. For those who are still a little unsure of this statement, studies in the assessment of the impact of research demonstrate the idea. They emphasise the participation of professionals, patients and the remainder of the actors of the system throughout the entire process of research during which the effectiveness of research in reaching society is improved.

Hence, the AQuAS, in collaboration with the Fundación Bancaria “a Caixa”, considered it necessary for the systems of assessment to be involved too if we want research to have a greater impact. With this objective, and a great contribution from Maite Solans and Paula Adam, the first monographic on Responsible Research of the SARIS (Assessment System of Research in Health) was presented. As a result of reviewing the existing international literature, 47 indicators were identified that measure the activities and participation of the actors in research institutions.

The indicators identified cover a large part of the research ‘process’, and they have been grouped in six aspects  – training, governance, resources, activity, dissemination, and primary results. This allows us to see how the different actors in the system can be involved during the entire process of research (planning, execution and translation).

Figure 1. Aspects in the process of research

However, we need to be cautious! On the one hand, the proposed indicators can be useful to stimulate and open up the reflection on how to monitor the activities carried out in research institutions in relation to the participation of the actors of the system. On the other hand, it must be pointed out that an indicator must be used responsibly by taking into consideration their context, incentives and the distortions that a measure can provoke. Experts in measures and indicators in science know very well that the research fabric and the research system change their behaviour according to what is being measured, ‘you get what you measure’, said Cyril Frank, chairman of the panel on the impact of research in health of the Canadian Academy of Health Sciences (CAHS).

Referring to participation in research, the question of measure is even more complex because it is still in its infancy. As Derek Stewart said, director of Patient Involvement of Nottingham Biomedical Research Centre and speaker at the SARIS session where this monographic was presented:

“One of the greatest challenges of measures is that ‘inputs’ are often measured – the number of people that participate, the number of groups that have been called or who have been talked to or the number of studies in which patients participate. It is about carrying out actions that add value, that help provide knowledge for solutions for patients”

Derek Stewart’s reflections during the preparation of his conference can be found on his blog ‘Making a difference’.

Indicators should help to answer specific questions based on each situation and need, and this is why it is essential to assess their relevance and feasibility within their context. The concept of relevance refers to the proximity of an indicator to a need and specific question that we pose; for example, what is the real value of the participation which an indicator measures? The concept of feasibility refers to how easily available and affordable data is when constructing an indicator.

As can be seen in Figure 1, among the indicators found in the literature there is a large number that are relevant, which was to be expected because they are recommended by very prestigious entities. Nevertheless, their feasibility in our environment is low in the majority of cases which means that although we have identified several indicators with limitations, none are fully recommendable.

Figure 3. Feasibility vs Relevance of the 47 indicators

Therefore, bearing in mind the context of research in Catalonia, at AQuAS we have catalogued the indicators as follows:

• 27 indicators as not recommendable for use
• 20 indicators with limitations
• No indicator as being fully recommendable

Our findings allowed us to learn a valuable lesson: before defining indicators or measuring the participation in research, we must first explore what is done in our environment and so by first analysing what is feasible we can then decide what the most relevant actions are.

The success of assessment systems depends on the acceptance of their processes and results among those in charge of taking decisions and the research communities which are being assessed. The challenge, thus, is to understand what is done in practice in our environment based on the guide which the indicators in the international literature have provided us with.

Let us continue!

Post written by Ion Arrizabalaga.

(Post published jointly in the AQuAS blog and the blog of CaixaCiència)