Shall we go an extra mile? The IMIM and IDIBELL place the patient at the centre of research

24 Jan
Maite Solans Domènech

Research impact assessment studies show that to achieve more impact on society the participation of ‘people that can provide value’ is an important factor. What these studies show us is that making key actors participate in the long process of research can improve the efficacy of its application and its impact on society. In the conference which AQuAS organised on Participation in Research last April 4, Derek Stewart, very much involved in Patient and Public Involvement and Engagement at the NIHR Nottingham Biomedical Research Centre, told us that participation provides different perspectives to research. In addition, Derek Stewart explained that “while patients have the opportunity to configure the future and make sense of what is happening to them in their day to day, researchers have the opportunity to legitimate what they do and make their results visible.”

So what have we learnt from all this? Firstly, that there is diversity of participation in research with a wide range of ways of interaction that are inserted in the different levels of the research process. Secondly, that despite individual idiosyncrasies, a global and shared approach is needed to avoid contradictions and to take advantage of mutual learning. Thirdly, that a commitment is needed on the part of all the different institutions and the research community in order to favour participation in research and to have an impact on society. This is why a Work Group on Participation in Research has been created, (#SomRecerca). Under the initial coordination of AQuAS, different health research institutions have come together to promote actions, agents or strategies that facilitate participation and that foster more awareness of the research community. The principles that accompany this group are based on mutual support and the acceptance that diversity and different realities exist within each context.

The first step taken by this group has been to hold conferences in two institutions (IMIM and IDIBELL), last 22 and 23 of January, under the title Shall we go one step further? Placing the patient at the centre of research. These conferences have been a good opportunity to present experiences that were already on the go within the institution itself which place the patient at the centre of research.

The conferences have made the different experiences stemming from individual motivations worthwhile, of researchers or users themselves, and they have been inspirational as examples of where one can start. The patient has been placed at the centre of research in these experiences: to obtain resources, to generate ideas, to prioritise research or to be a part of the research team, among others.

And more specifically, actions have been proposed that help develop the participation of patients which provides value in research:

  • Informing patients of the research that is being carried out in institutions; that is, bringing research closer to citizens
  • Communicative skills of the researcher towards a non-scientific audience
  • Effective communication channels between patients and researchers, be they via an associative network or via other activities or means of communication such as conferences with patients, etc…
  • Support for all those involved in participation: of recruitment, of time, of resources, between researchers or with a guide.
  • Stable work groups that include the participation of different profiles (basic and clinical researchers, assistants, managers and patients) so as to identify needs, come up with ideas or make proposals, for example.

In short, the synergies between patients and researchers must be sought out in those cases where value can be provided. It is not always and easy path but one which makes a whole lot of sense.

Post written by Maite Solans Domènech.

Antisuperbugs: 3 million euros for technological innovation in the prevention of resistance of microorganisms to antibiotics

31 May

The healthcare market is one of the areas with the greatest purchasing impact in the public and private sector in Spain with a business turnover of 71 billion euros annually. It is a very complex market where the formulas used for purchasing both consumer goods and drugs, and services depend on the centres themselves. However, they also depend on the local regulations of suppliers, autonomous regions as well as state and community legislation.

This complexity does not only make it impossible for companies to make their products or services available to procurers but it is also often the interested parties in the purchasing that see the inclusion of these produces in their centre and their accessibility to their staff as a truly impossible mission.

And this is a whole lot more difficult when it comes to incorporating new technologies that meet the real needs of professionals.

In a panorama where investment in research and development is at its lowest point in recent decades, having a pre-commercial public procurement project subsidised by the European Union with 3 million euros is a big opportunity for companies that can offer their R+D services to create innovation which responds to the real needs of professionals.

An innovative public procurement project is an approach to innovation based on demand, where a group of procurers combine their resources to share risk in a joint R+D effort in the industry to provide solutions to needs which are not being met by the market. In the case of our project, it would be an ICT solution aimed at the early detection of microorganisms resistant to antibiotics (superbugs) in a healthcare environment, the Antisuperbugs project, coordinated by Jean Patrick Mathieu of the Agency for Health Quality and Assessment of Catalonia (AQuAS).

Antisuperbugs team (from left to right): Kristina Fogel, Sara Bedin, Maren Geissler, Dag Ilver, Benian Ghebremedhin, Jean Patrick Mathieu, Enric Limon, Gonçalo de Carvalho, Gemma Cabré, Esther Arévalo

The consortium coordinated by the AQuAS, an expert institution in the definition and execution of public procurement projects in innovation in Spain, consists of 6 contracting authorities (the Catalan Institute of Oncology IDIBELL (ES), Hospital Mútua of Terrassa (ES), Sheffield Teaching Hospitals NHS Foundation Trust (UK), Helios Kliniken (DE), Universitaetsklinikum Aachen (DE) and Autonomous Province of Trento (IT)), and two expert institutions in their area of research at RISE ACREO (SE) and Sara Bedin (IT).

Enric Limon of the VINCat Programme (Surveillance of Infections) of the CatSalut, principal researcher of the project, sees having a detector of microorganisms resistant to antibiotics as a business opportunity for a company.  In the United States, Asian and European Union markets, solutions are being sought that will make it possible to have a rapid detection system that activates early detection mechanisms. The resistance of certain microorganisms to antibiotics is creating a situation of alarm across the world to which the World Health Organisation (WHO) itself has drawn attention, estimating a figure of 50 million deaths in the years to come if adequate measures are not taken. The successful tendering companies will not only have access to funding but also receive the support of hundreds of professionals from six European institutions at the highest level in research and a potential market in a first phase of hundreds of hospitals and healthcare centres interested in purchasing a solution that they themselves have helped create.

Gonçalo de Carvalho, expert biologist in resistances at the Catalan Institute of Oncology, explains the need for this project to consider the possibility of creating new modules that when applied to the technologies themselves enable new detections to be made which makes purchasing them even more attractive to health institutions by adapting them to their own needs.

The tender which will be opened to companies in the next few months forms part of the Pre-Commercial Public Procurement programmes funded within the European Commission’s H2020 framework of reference. All the information regarding the Antisuperbugs project and the tendering options are available on the website of the project.

Interested companies can access the questionnaire of the open call of the market.

There is also the option for companies to offer their availability by putting in a tender as a consortium.

Post written by Jean Patrick Mathieu, Enric Limon and Gonçalo de Carvalho.

Who talks about what at EUnetHTA?

3 May
Marta Millaret

AQuAS is analysing the activities of dissemination of the EUnetHTA project, a European Joint Action comprised of 61 organisations from 29 countries and coordinated from the Zorginstituut Nederland in Holland. It is the European health technology assessment network.

Assessment, as Emmanuel Giménez talked about in this post,”can directly help in the practice, management and sustainability of different health systems” by providing the best available knowledge for taking decisions at different levels.

It is precisely on this subject that a proposal has recently been published regarding the regulation of drugs and health products within the framework of the European Commission and which is being debated and outlined for implementation.

The aim of the EUnetHTA project is to facilitate cooperation between different institutions in the field of health technology assessment to take advantage of expertise and useful knowledge to favour health systems which will consequently provide potential benefits for the health of citizens. It is about generating quality knowledge by using common methodologies in a systematic and transparent way and it is about doing this by working collaboratively and by avoiding duplicities.

AQuAS participates very actively in different work groups in the project (assessment, implementation, generation of evidence, dissemination) and today we are going to put the spotlight on the dissemination group, led by Iñaki Imaz of the Instituto de Salud Carlos III (Institute of Health Carlos III) in Madrid. This work group has the challenge of communicating more and better regarding what the EUnetTHA project is.

To do this, there are different strategies and one of these is the assessment of the dissemination itself, a task led by AQuAS. To this end, the different activities are being brought together and a first analysis has been carried out which will be repeated every four months with the idea of obtaining recommendations and specific actions.

In the first intake, almost a 100 activities have been included. 78% correspond to the activities in scientific meetings (workshops, presentations, oral communications and posters); 5% are articles in scientific publications with an impact factor in the Journal Citation Reports and the remainder (17%) are other publications, e-meetings and activity done in social networks.

This analysis will make it possible to look at who disseminates, what is disseminated and where it is disseminated as well as looking at the content and who the majority target audience is of these dissemination activities within the framework of the EUnetHTA project. The results of the first analysis will be presented at the next general assembly of the project in Cologne (Germany) at the end of the month.

We feel that it is interesting to find the way to involve all those participating in facilitating the dissemination of the project so as to achieve a more active communication of the EUnetHTA project. Involvement in dissemination means getting the people that work on a project to disseminate both their work and their project at the same time. In this way, everyone stands to gain.

Will we succeed in getting all participants more involved in the activities of dissemination? Will our assessment serve to improve things? That is to be seen.

Post written by Marta Millaret (@MartaMillaret).

Nurses in Barcelona adopt the culture of dialogue to define their professional future

5 Apr
Glòria Novel and Núria Cuxart

Asking ourselves questions, reformulating questions, rethinking the way we want to be, what we need and how we want society to know and see us. This is, without doubt, a difficult exercise to carry out as individuals but it is even more difficult to do this as a profession.

Agreeing with each other is by no means easy. Training, method and a desire to do so is needed. Having these premises clear, we initiated the RESET project at the Official College of nurses of Barcelona (COIB).

Guided by the company Diàlegs, specialised in mediation in health, we initiated an unprecedented process of participation in the nursing profession during which we went out into the territory to find out what the concerns, needs, wishes, complaints and proposals of nurses in the province of Barcelona were.

The process lasted the whole of 2017, after which our corporation was given the commission to develop the strategic lines on which the college members of Barcelona want us to work along with thousands of ideas that they would like to process.

The difficulty of the project was considerable. Apart from the geographical distances that existed and the difficulties in getting nurses involved, there was the added difficulty of coming up with a dynamic that had to be participative so as to facilitate environments of conversation, discussion and consensus among the hundreds of female and male nurses who have different professional realities and therefore varying priorities.

The Diàlegs company took on the challenge of making it possible by means of a process lasting 12 months during which participative methodologies were used to define the profession as it is today and that of the desired future. The framework for the project was based on the principles, values and methodologies of mediation, which led to a broad and necessarily inclusive view of the differences and susceptibilities of the nursing community.

The RESET project was carried out in three different stages: in the first stage, open debates were set up in circles of group discussion. The circles enabled a comprehensive collection of very valuable data which formed the basis on which to develop the following stages that consisted of two days of consensus: one to agree on the diagnosis of the situation the profession finds itself in now and another to define the future, with the aims and lines of action to be developed.

As a result of these three stages of the RESET project, 52 group discussion circles with 925 participants were set up, that is, with people who participated one or more times. 3,762 ideas were collected as well as some proposals for the future, with nine thematic areas and 65 lines of action decided on by agreement. The level of satisfaction was very high and the participants showed a high level of interest in continuing in the project, repeating participations in the three stages.

It must be said that the key to the success of the process was the large number of people that committed themselves to the project right from the start. We are referring to what we called the Driving Group made up of 208 people (with representatives from all over the territory, all positions and susceptibilities) who worked from the start both in the co-design of specific aspects as well as in the diffusion, organisation of group discussion circles and participation in the events for consensus.

Beyond the results of the RESET project, which are, in the end, a commitment to change with implications for the upcoming years, we still have much to learn and this can no doubt be extrapolated to the professional disciplines in health in which we are organised through colleges. We need to continue asking ourselves questions both in and out of the college organisations to positively drive change and development in all the aspects which bring us together as professionals. Continuity in the culture of dialogue is one of the most important challenges that came out of this fascinating process. This was the message that the nurses who worked in the Reset Project gave us. Therefore, from the COIB, this is our commitment.

Post written by Núria Cuxart Ainaud, director of programmes at the COIB, and Glòria Novel Martí, founding director of Diàlegs.

What are we doing about low-value medical practices?

8 Feb
Cari Almazán

The aim of the Essencial Project is to improve the quality of healthcare by providing professionals with evidence that is useful for them to make informed decisions in their day to day work.

What is special about this project is that this is done by identifying routine low-value practices in the health system and by using a strategy aimed at avoiding these practices.

Cari Almazán, the person in charge of this project, responds to questions in an interview.

What is the Essencial Project?

It is a project of the Department of Health of Catalonia led by the Agency for Health Quality and Assessment of Catalonia (AQuAS – its Catalan acronym), in which researchers from the AQuAS, health professionals, scientific societies and the Advisory Board of Patients participate. Each and every one, in their role, work with a clear objective: improving the quality of healthcare using a very specific strategy to identify low-value practices and thereby provide information to professionals to help them avoid doing all the things they do which do not offer any health benefits to the patient.

What is a low-value practice?

In usual medical practice, there are known routines that do not offer any benefit to the patient and it is difficult to understand why these occur but it is even more difficult to try and avoid them. In all likelihood there is a resistance to change and we need to spend a lot of time explaining what this project is about.

How does the Essencial Project work?

It works at different levels and we try to be systematic and transparent. This involves a line of work which includes: identifying low-value practices, finding knowledge (the evidence), informing about and implementing the project.

If a routine does not offer any benefit to the patient, why is it followed?

This is precisely what we ask professionals in primary care, among many other things. The comments “because we have always done it like this” or “because it is a request of the patient” are frequent. There is a certain tendency to want to feel we are being useful, a human one I would say. Both the professional and the patient feel better but on occasion, there is evidence which indicates that this “feeling better” is not accompanied by any benefit for the patient. This is what needs to be explained very carefully.

What role does the Essencial Project have in the day to day activity of a health professional and that of a potential patient?

There are many projects aligned with the initiative to improve the quality of healthcare. In this context, the Essencial Project is a tool of the health system to help health professionals make decisions. The Essencial Project thus aims to be useful to the health system and professionals. In addition, for a potential patient, knowing about this project can also help contribute to their understanding of why a health professional does not recommend a certain diagnostic test or treatment.

I am unsure as to whether the project is aimed at professionals or at citizens.

The Essencial Project is aimed at the entire population. On the one hand, it is aimed at professionals to provide them with this tool, but also at citizens. Why not? Whether citizens want this information is another thing altogether.

Do citizens show an interest in having all this information available to them?

We don’t know, we should ask them. We know of experiences where it is not clear that the information which is given is the information that citizens want but at the AQuAS we believe that sharing knowledge and methodology is an exercise in responsibility.

Who chooses the recommendations?

Cari: They are chosen in collaboration with the different scientific societies. Right now, there is a participative process on the go to prioritise low-value clinical practices in the framework of the Third Conference of Care in Sexual and Reproductive Health. In the Essencial Conference 2017 subjects for recommendation were prioritised based on the participation of the professionals that attended the conference. The idea is that it is the professionals themselves who identify when and where practices of this sort occur.

Who creates the contents of the Essencial Project?

The contents that accompany each recommendation are the result of the participation of many expert professionals in different disciplines. These contents are then validated. In terms of the videos, professionals at the AQuAS along with health professionals produce these which explain the key idea of each recommendation in the first person in an informative manner.

What would you highlight of the Essencial Project?

That we offer every recommendation, the chance to collaborate with health professionals, a bibliography and files for patients in a systematic way.  This last idea of files for patients is a subject which we will delve into more deeply shortly from the agency. Perhaps, what I would say is most important here is that all this forms a part of a commitment to bring the culture of assessment and the culture of Choosing Wisely at all levels closer to everyone: the citizenry, professionals and the health system.

Crisis, inequalities and policies: proposed intinerary

7 Sep

Unfortunately, inequalities in health are still an issue today including in our country. The crisis of recent years has once again put the spotlight on this subject.

 This is why we propose an itinerary taking us through the different texts which we have published on the subject in this blog and, in particular, we invite you to read the original texts which are mentioned here in more depth, a large proportion of which have been elaborated at the AQuAS.

In September of last year, Luis Rajmil reflected on social inequalities in child health and the economic crisis in this post placing the concepts of equality, equity and reality  on the agenda for discussion.

 “At present, there is enough accumulated information that shows that life’s course and the conditions of prenatal life as well as life during the first few years are very influential factors in the health and social participation of an adult to come.”

At a later date, the Observatory of the effects of the crisis on the health of the population published its third report but prior to that, a post was published with a collection of individual thoughts and reflections on this subject by Xavier Trabado, Angelina González and Andreu Segura focussing on, respectively, the effects of the crisis on the mental health of people, the coordination of different mechanisms in primary and specialised care, the urgency for community health actions and the need to engage in intersectoral actions.

 “It is urgent to put community health processes into action; processes in which the community is the protagonist, which constitute the shift from treating an illness to a bio-psycho-social approach which gives an impulse to intersectoral work in a network with local agents, with who there is the shared aim of improving the community’s well-being. Based on the needs detected and prioritised in a participatory way and with the local assets identified, these processes activate interventions based on evidence which are assessed”

In this other post, Cristina Colls presented an interesting case of the application of scientific evidence to political action which occurred with the revision of the socio-economic dimension of the formula for allocating resources to primary care.

 “Social inequality leads to an unbalanced distribution of the population in a territory, concentrating the most serious social problems in certain municipalities or neighbourhoods having higher needs for social and health services than other territories. In this context, more needs to be done where needs are greater if the aim is to guarantee equality in the allocation of resources”

Finally, the most recent post was written by Anna García-Altés and Guillem López-Casanovas. It is a text that provides food for thought based on the latest report published from the Observatory of the Health System of Catalonia on the effects of the crisis on the health of the population.

 “Understanding the mechanisms  by which social inequalities have an impact on the health of the population, so as to know how best to counter or neutralise them, in any place and at any time, is an issue that must still be addressed by our social policies”

We hope that you this very short itinerary through these texts, initiatives and analyses that aim to be useful in tackling inequalities has been of interest.

Post written by Marta Millaret (@MartaMillaret)

Committed to research assessment 100%

31 Aug

Since 2001, the AQuAS (Agency for Health Quality and Assessment of Catalonia) has been in charge of evaluating the proposals of research projects that are eligible to receive funding from the Fundació La Marató de TV3. It means prioritising the research with the most quality using a quantitative and qualitative methodology in a process that lasts months and that ends in a face-to-face meeting of international experts.

Group photograph of the final meeting with international experts in assessing the FMTV3 call on Diabetes. Barcelona, September 2016. From left to right and top to bottom: Gerald Tomking (Diabetes Institution of Ireland), Joan MV Pons (AQuAS), Johann Wojta (Medical University of Vienna), Stephan Zipfel (University of Tuebingen), Karlheinz Friedrich (University Hospital Jena), Maite Solans (AQuAS), Harold de Valk (University Medical Centre Utrecht), Hans-Georg Joost (German Institute of Human Nutrition), Juergen Eckel (German Diabetes Center), Ernest Vinyoles (external observer), Anna Monsó (external observer), Gabriel Capellà (external observer), Jaume Reventós (external observer), Bea Ortega (AQuAS), Esther Vizcaino (AQuAS), Núria Radó (AQuAS)

 

The assessment of research which is centred at the AQuAS considers three different stages in the cycle of research. The assessment of research proposals (avaluació ex-ante), assessment during research (ongoing assessment) and assessment once the research has been completed (avaluació ex-post). The AQuAS has a long track record and lengthy experience in all these stages of research.

The fact that one and the same institution does assessment of research and assessment of the health system is altogether exceptional and is one of the strong points of the AQuAS. The two types of assessment benefit each other mutually as a result of the knowledge that is generated.

Another area of research in which the AQuAS has been a pioneer is in assessing the impact of research. This year, the International School for Research Impact Assessment (ISRIA) will be held in Denmark (more information here).

Since last year, the PERIS call is also assessed, which is an important new event and a strong boost for Catalan biomedical research. With regards to this call, it is worth highlighting the will and determination in placing people at the centre of research, and that we, in fact, right now find ourselves in a very good period because the analysis of data offers many opportunities in research.

Apart from all this there is a long-term task, which will take years, which has to do with the question of research and gender.

The article A global call for action to include gender in research impact assessment very quickly had a strong impact in social networks. It has been a year since we published a post recommending that it be read.

Almetrics evolution of this article: 220 (26/8/2016), 258 (31/8/2017).

The article heads the publications of this magazine in terms of impact.

Noteworthy facts:

Regarding the question of research and gender, we took the topic up again on this blog with another post as a call for reflection and to be aware of the reality that surrounds us, both within and beyond the area of research.

At AQuAS we ask ourselves how such a small team in number but huge in involvement manages to deal with the complex mechanism of comprehensive assessment of several research calls, research impact and also carry out research on the involvement of citizens in research, research in the media and the already mentioned question of research and gender.

In short, a lot of work done and a lot of work on the go at present with 100% involvement of the research team at the AQuAS and of many other collaborators and experts.

The AQuAS research team. From top to bottom and left to right: Ion Arrizabalaga, Paula Adam, Núria Radó and Esther Vizcaino. They do not appear in this photograph but they are also part of the AQuAS research team: Bea Ortega i Maite Solans

Post written by Marta Millaret (@MartaMillaret)

The value of collaboration and participation in the Essencial Conference 2017

4 May

In the world of health, the involvement of professionals is necessary for a project to be successful and for it to reach health centres. On 21 April this year, the Conference for the implementation of the Essencial Project was held with the slogan “More is not always better: let’s avoid low value practices”.

When talking about the Essencial project, an initiative that identifies clinical practices of low value and promotes recommendations to avoid them, the collaboration between professionals becomes fundamental and even more so with reference to primary care, which is the gateway for patients to the health system.

For a conference devoted to this project, we wanted to have the active participation of health professionals and this did not seem easy in a conference where 750 attendees were expected.

How do we get them all to express themselves? How do we listen to their opinions? How do we use new technologies to meet these challenges?

Glyn Elwin, a doctor, researcher, Professor at the Dartmouth Institute for Health Policy and Clinical Practice in the United States and a real authority on the subject of shared decisions attended the conference.

At a later stage, a round table was held with speakers that spoke about the implementation of the Essencial project from the perspective of the project, of organisation, of primary care teams and of patients. Provision had been made for members of the audience to make their first contributions here in a round of questions open to the floor. Thus far, no difference to what happens in other scientific conferences.

But what was special about the approach of the 2017 Essencial conference?

We wanted to innovate and do things somewhat differently. A monologue was presented showing what the day to day of a primary care outpatient consultancy might be like. With the aim of reflecting on the communication between health professionals and patients, we highlighted the importance of communicative skills when explaining to patients why it might NOT be necessary to carry out a test or receive medication.

Using Kahoot (a tool for online voting) the attendees, in real time, were able to decide on the most important recommendations to include in the Essencial project. In this way, it was possible to vote and then make known the chosen recommendations during the conference in a process in which the professionals were the protagonists.

To end it all, the Prize for the most innovative idea to avoid low value practices in primary care was awarded as part of the conference’s programme. The prize consisted of a trip to this year’s Preventing Overdiagnosis Conference to be held in Canada in August. The winner was Mariam de la Poza of the primary care centre CAP Doctor Carles Ribas in Barcelona with a contribution on the recommendation “More antibiotics is not always the best: let’s avoid side effects, unnecessary costs and antimicrobial resistance”. Excitement right to the very end!

It goes without saying that organising a conference is complex and that there are many professionals taking part who do not always appear in the programmes. An expert team in communication and events organisation is crucial for the success of a conference of this type.

Post written by the Communication’s Unit at the AQuAS.

Wishing you all a Joyous Festive Season from the AQuAS blog

29 Dec
nadal-2016-marta-millaret
Marta Millaret

From the blog AQUAS we hope you are having a good festive season and would like to thank you for reading and following us.

We publish weekly in Catalan, Spanish and English on subjects related to the projects that are being carried out at AQuAS and we also publish contributions from guest authors. The editorial line of the blog includes a focus on assessment from different points of view and areas of the health system.

Along these lines, we have dealt with healthcare and quality results presented by the different agents who make up the healthcare system, the whole range of observatories of the Catalan Health System (including that which deals with the effects of the economic crisis on the health of the population and innovation), qualitative research, integrated care, the assessment of mHealth, inequalities in health, patient involvement, doctor-patient communication, shared decisions, patient and citizen preferences, variations in medical practice, the prevention of low-value clinical practices, the impact of research, information and communications technology, data analysis in research, tools for the visualisation of data, innovation and health management, the gender perspective in science, statistical issues, clinical safety with electronic prescriptions, chronicity (not forgetting chronicity in children), the effects of air pollution in health and current topics.

blog-aquas

The most read articles in 2016 have been:

However, we have published many more texts, 51 posts to be precise, without counting this one, with the aim of sharing knowledge and generating a space for reflection, open and useful for everyone.

Thank you very much, a joyous festive season and see you in the new year!

Post written by Marta Millaret (@MartaMillaret), blog AQuAS editor.

nadal-2016-aquas-bicicleta

 

Health data: Do we give citizens what they want?

24 Nov
central-de-resultats-qualitatiu
Dolores Ruiz-Muñoz, Anna García-Altés and Hortènsia Aguado

The right to receive advice with regards to the information available on the network is reflected in the Carta de drets i deures de la ciutadania en relació a la salut i l’atenció sanitària (Citizens Bill of Rights and Duties relating to health and healthcare), updated in 2015. In particular, it specifies that a person has the right to obtain accurate and reliable recommendations from health professionals in terms of the available health information on the network (web pages, applications, etc…).

It is a fact that, from different professional sectors, we are more and more frequently identifying citizens as a key group to take into consideration when communicating the outcomes of our work, including the health sector. The different actors involved in disseminating health information resulting from the Catalan health system activity are no exception. When we publish our data we do it more and more in a way that is not only aimed at informing health professionals on the one hand but also at being accountable to citizens as end users.

But have we really asked citizens what information they want to obtain from us?

From the Results Centre of the Catalan Health System Observatory we publish a series of reports annually with quantitative indicators that aim to measure, assess and disseminate the results obtained in the different areas of the public health system. Up to the present, to disseminate this information beyond the comfort zone of the health sector, we have published a series of infographics with the information that we have considered to be most relevant for citizens, making the effort to create a user friendly format.

infografia-atencio-primaria

 

During the first semester of 2016, we spent time reflecting on our labour and we realised that we did not in fact know whether what we were publishing for citizens really reached or interested them. We did not even know what it was that citizens wanted to receive from us. To answer these questions we carried out a qualitative study of Catalan citizens to find out what their needs for health information were, but not limiting ourselves to that produced by the Results Centre.

We created three discussion groups and invited citizens randomly selected from Registre Central d’Assegurats del CatSalut (CatSalut’s Central Registry of the Insured) to freely express what they felt their necessities for health information were. What we discovered was that the population is not interested in receiving health information in a general or systematic way but rather only wants health information when they have a specific personal need and which is directly related to what is affecting them at a given time. They are not interested, therefore, in receiving health information about the population as a whole nor of how the health system works. They state that this information is necessary but feel it is health professionals who need to have it and know how to manage it. In this way, they place their trust in the health system by dissociating themselves from this type of information.

Furthermore, they consider it of interest that the information be made available on the networks but state that, whether they actively search for it on the internet or not, what they need is to be able to contrast the information at a later stage with their primary care physician or specialist, and that it be this professional who discerns what the best information available is for each occasion. What is more, they clearly identify this professional as being the person who needs to know the health information produced systematically by the Catalan health system.

We presented the results of this study at a recent congress, to be exact, the XXXIV Congress of the Spanish Society for the Quality of Healthcare and the XXI Congress of the Andalusian Society for the Quality of Healthcare, generating a very interesting posterior debate regarding these results. One of the attendees at the congress stated their concern for the fact that citizens were not interested in receiving general health information. The debate centred on how we could educate the population into showing an interest in this information and on how to make it reach them. We believe that the key underlying question here is whether this need be done at all.

The public at large have an overwhelming amount of information at their disposal on an infinite number of different subjects on a daily basis. It seems clear that when a person has a specific need regarding their state of health they consult a professional in whom they trust. It is obvious that to us, as healthcare professionals, we will always feel that the information we produce is of such interest as to make others want to know about it, but it is also probable that our enthusiasm makes us biased when interpreting reality. We should perhaps ask ourselves whether we need to make the effort to provide the public with information they say they do not need nor interests them, and whether we are prepared to accept their decision and respect it.

Post written by Dolores Ruiz-Muñoz, Anna García-Altés and Hortènsia Aguado.