citizen – AQuAS Blog

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

24 Jan

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.

Preventing overdiagnosis 2018: Three key points to reduce overdiagnosis

8 Nov

This year, the annual Preventing Overdiagnosis conference was held in Copenhagen, co-sponsored by the World Health Organisation, where delegates from about 30 countries attended.

The space generated in this conference provides the opportunity to approach the subject of how health professionals, researchers and patients can implement solutions to problems related to overdiagnosis, overtreatment and overuse by using the evidence available.

Overall, some of the subjects discussed were the implementation of recommendations to “stop doing”, the challenge of dealing with excessive diagnosis in clinical visits, the impact of overdiagnosis, the fact of converting citizens into patients and the role of risk factors in excessive diagnosis.

John Brodersen, professor of family medicine at the University of Copenhagen, started the conference by making a reflection on what is and what is not overdiagnosis. In general, overdiagnosis means turning people into patients unnecessarily by identifying problems that were never going to cause harm or by medicalising ordinary life through expanded definitions of diseases. This overdiagnosis can trigger a cascade of excessive treatments.

Later, Iona Heath, general practitioner and member of the Organising Committee of Preventing Overdiagnosis, asked the audience the question Why are we so afraid of normal? She reflected on why doctors are willing to rush into a diagnosis and pointed out that the task of defining “who is normal” is a challenge. Who should define who is normal and with what criteria?

Gisle Roksund, general practitioner in Norway stated that the general tendency in medicine is: “find it as soon as possible and do more”. Similarly, he pointed out that people are being labelled as ill with “pre” conditions when they are not. And he ended off by saying that life itself is a “pre-mortality” condition.

On his part, Paul Glasziou, general practitioner and professor at the Bond University in Australia, presented three key points to reduce overdiagnosis: reducing over-detection, over-definition and medicalisation. Juan Pablo Brito, endocrinologist and researcher at the Mayo Clinic, talked about a new term in his conference on diagnosis centred on the person: Extradiagnosis: when the diagnosis is not appropriate for the biology, context or preferences of a patient. The diagnosis centred on the patient is based on identifying the problem and carrying out actions to find the solution. That is, “reaching a conclusion together which makes intellectual, emotional and practical sense”.

In mental health, Allen Frances, psychiatrist in the United States, highlighted that overdiagnosis in psychiatry could be avoided if general practitioners had more time in their visits to get to know their patients better.

On the other hand, Steven Woloshin and Lisa Schartz, general internists and co-directors of the Center for Medicine and Media at The Dartmouth Institute, explained that some advertising campaigns could broaden the definition of diseases which can lead to an overdiagnosis and a medicalisation of life experiences. These reflections highlight the importance of having regulation related to these campaigns.

Lastly, the Preventing Overdiagnosis is a space which allows for the sharing of experiences, both theoretical and practical, of what is being done in the world with regards overdiagnosis and overtreatment.

From the AQuAS, and in collaboration with health professionals and scientific societies, the Essencial project in Catalonia tries to address these issues by contextualising them in our environment and by trying to implement recommendations that avoid low value practices and in consequence, an overuse.

Post written by Johanna Caro Mendivelso (@jmcaro103).

Medical information in the press and the doctor-patient relationship

15 Feb

For years, I have been under the impression of not having a clear idea of how information related to the complex world of medicine and health should be disseminated in the daily news media, both of the science that it is based on and of the difficulties and dilemmas in applying it in practice.

I have repeatedly refused offers, with only rare exceptions, to write texts on these subjects in newspapers or books of a non-professional nature: I had serious doubts of how to transmit this knowledge to the public at large. Looking back critically on these reservations I have had, I think they have been related to the paternalism inherent in the medical training received by the professionals of my generation: the fear that the public will make an incorrect interpretation and come to abhorrent conclusions of the facts disseminated, an audience with little knowledge on the theoretical foundations and subtleties of these facts, which are only accessible with proper professional training. Indeed, experience has shown me that these reservations were indeed justified.

However, at the same time, I have witnessed the growth of citizens’ autonomy, now widely acknowledged, and their right to take “informed decisions”. This position, which has come to define the 21^st Century as “the patients’ century”, acknowledges their right to know relevant professional data so as to be able to take accurate decisions autonomously; it has an undeniable foundation but if we are to avoid that this leads to the proliferation of distorted facts it will require a rigorous preparation and an absence of spurious interests on the part of those divulging information. Ideally, these informants should contribute to “health literacy” in a way that is balanced, objective and unemotional.

The tension between these two conceptions of health information goes in parallel with that which exists between two extreme views of the doctor-patient relationship: the classical paternalistic one (“the doctor knows better than anyone what is best for a patient and their decision must be accepted”) and that of the “informed consumer” with autonomous decisions. The other extreme of this corresponds to an “imminent revolution” in which it would be the very well-informed patient, (basically as a result of the spread of refined computer technology) that would take the most important decisions concerning themselves.

Personally, like many others, I prefer a more balanced approach: that corresponding to the “interpretative” and “deliberative” models of the doctor-patient relationship, in which the experience and knowledge of the former interact with the latter respecting their autonomy.

I think that this dilemma runs parallel to the medical information found in daily news media: on the one hand, there is the social demand to inform citizens of current advances so they know their options or opportunities as “informed consumers”; on the other, there is the temptation to fuel the emotions (triumphalism or fear) of the reader who is untrained by offering them information which is largely uncritical, lacks rigour or is insufficient, with the risk of a biased, distorted or exaggerated interpretation. The more or less unreal notions that some informants may have on medical and health problems (common, alas, among many professionals) can be transmitted like this directly to the citizen and to their emotions and desires.

In the case of news related to medical advances and innovations, I would like citizens to know what expectations these novelties raise, maybe now within their reach, and the magnitude or relevance of the problem that can be lessened or resolved, and that this be done by using a rigorous and prudent terminology so that citizens can also create their own opinion on the solidity or temporariness of an innovation, and of the related uncertainties and limitations: not only of the benefits that they can provide them with but also of the undesired, uncomfortable or harmful side effects they might produce, and whether they are in anyway frequent or probable. In other words, I would not like the main aim of this information to be that of creating hope or fear in the reader, or give them the idea in a triumphal tone that in the wonderful world of science, the war against disease has claimed a new victory, especially at the hands of local researchers.

I have recently taken part in an analysis of the news published in the daily press in Catalonia on medical innovations.

Even though some well-documented news described in sufficient detail was found that could provide balanced information to the reader in this analysis, in many other cases the information was one-sided or not very thorough and was devoid of facts related to questionable aspects of the innovation and their risks. It resulted in a biased message which often tended to induce optimism in the reader rather than educate them in the knowledge of the pros and cons of the medical innovations.

At a time when there is a call for a user’s well-informed autonomy, I would be delighted if healthcare culture and the attitude of the news media did not amount to a paternalistic doctor-patient relationship. In this regard, there is no doubt that much still needs to be done.

Post written by Gaietà Permanyer Miralda. Emeritus physician. Unit of Epidemiology, Cardiology Service. Hospital Vall d’Hebron, Barcelona.

What are we doing about low-value medical practices?

8 Feb

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.

PEGASO: Fit For Future: connected health and long-term strategy

16 Nov

Developing a platform based on mHealth that has mobile applications (apps), a game and intelligent sensors has been the goal of the European project PEGASO Fit For Future, which began in December 2013 and ended last July.

It is a platform that aims to improve both the lifestyles of adolescents (diet, physical activity and hours of sleep) and the knowledge that they might have about these life styles. To achieve this, intelligent sensors (t-shirt and bracelet) which record the physical activity and hours of sleep of an individual and also different apps which record the intake of food by means of a diary and footsteps taken by means of an accelerometer were developed and tested.

The PEGASO Fit For Future platform detects which lifestyles a user has and makes recommendations on how to improve them. In addition, it incorporates a gamification component: based on how healthy the lifestyle of a user is as well as how much their knowledge improves, which are then converted into obtaining a greater or lesser amount of points.

As an example, here we can see a screenshot of a fictitious user:

Professionals from different areas collaborated in the project: developers of games, apps and sensors, design and gaming experts, health professionals (doctors, nurses, experts in nutrition, experts in physical activity and psychologists) and also experts in health technology assessment and public health.

There were two different phases of the project: the development phase of the platform and the assessment phase.

During the development phase, while some professionals put their efforts into ensuring the quality and appropriateness of the medical and clinical content of the platform, others concentrated on aspects of a technological nature.

Nevertheless, the opinions of the end users themselves, adolescents, were always kept in mind during this process. In three iterative stages, boys and girls in Catalonia, Lombardy, England and Scotland tested this technology out in the different stages of its development.

The proposals for improvement made by the adolescents including their preferences were, whenever possible, kept in mind for the later versions of the platform. The aim was to guarantee as far as possible that what was being developed was practical for and accepted by the end users.

The last stage of the project was the assessment of the platform. The assessment of the different elements (apps, games and sensors) was to see if they really did help to improve the lifestyles and knowledge about lifestyles among adolescents and to assess the experience of the user after having used the platform.

To this end, a pilot study was carried out with adolescents from Catalonia, Lombardy, Scotland and England in which 365 mobile phones with the PEGASO platform installed were used by adolescents.

After six months of use, the intervention was assessed by means of validated questionnaires, a qualitative methodology and data obtained from the platform itself. A control group was introduced allowing for comparisons to be made with adolescents that did not have access to the platform.

The results of this study will help to evaluate whether new technologies are practical in helping adolescents improve both their lifestyles and knowledge about these lifestyles, a population group accustomed to using new technologies and that, in general, do not often visit health professionals.

Getting closer to the population by using mobile technology and the recreational aspect of gaming could be a good strategy for an intervention of this type related to the promotion of healthy lifestyles among adolescents. At a population level, it is a long-term strategy and hence the slogan “Fit For Future” of the PEGASO project.

Post written by Elisa Puigdomènech.

Low value clinical practices from the citizenry’s perspective

13 Oct

During the fifth edition of the international Preventing Overdiagnosis Congress, strategies for implementing solutions to avoid overdiagnosis and overuse were addressed based on the available scientific evidence.

In this year’s edition, which was held in Barcelona last year, apart from the involvement of professionals and organisations, patients had the opportunity to actively participate.

Experiences in different healthcare areas were shown in the use of best practices to communicate and to empower patients to achieve a better understanding of shared decisions.

Different world initiatives addressed the best practices to empower citizens in subjects related to low value practices, overdiagnosis and overtreatment. Experiences were shared and a debate was initiated on fundamental subjects such as the communication and participation of patients.

In recent years, the Essencial Project has studied the perspective of health professionals on low value practices, their causes and possible solutions so as to avoid them.

Essencial Project team: Cari Almazán, Johanna Caro, Liliana Arroyo and Hortènsia Aguado

For example, in a previous post, we explained the results of a survey we carried out with professionals in the field of primary care. The results of this survey highlighted the need to involve and empower the population more. Patients are also important decision makers in relation to their needs and in the demand for certain health services. Hence, the project must be accompanied by a communications strategy aimed not only at patients but also at citizens in general.

That is why we, from the Essencial Project, have been interested in finding out the opinion of patients in addition to the perspective of professionals. In the international Preventing Overdiagnosis 2017 Congress we participated explaining how an exploratory first approach was made to identify the beliefs, attitudes and perceptions of patients regarding the most important elements in consultations, low value practices and the essential components of an effective dialogue between professionals and patients. The end purpose of this was to understand the position of people before initiating possible interventions in the citizenry and to determine the most effective communicative tools and channels.

In Catalonia, AQuAS carried out the first exploratory qualitative study at the end of 2016 using a focus group of parents and children assigned to a primary care team. Low value practices in paediatrics are frequently associated with an over-diagnosis regarding antibiotics, bronchodilatadors, antipyretics or imaging tests, among others. These scenarios have been transferred to the debate with patients themselves. In total, seven women, mothers and grandmother of 14 children participated.

The first point of discussion was the most important elements in a consultation with health professionals and it was found that the treatment (29%) and information received (28%) are the most important elements received by professionals (representing approximately 60% of those mentioned). The relationship with the professional comes next (15%, often related to the degree of trust), followed by the feeling that their wishes or needs are met (12%), information requested (9%) and the diagnosis (5%).

The participants did not know the concept of low value practice but did recognise situations of an excessive prescription of medication or the request of unnecessary tests, especially in emergency services and private consultations.

Regarding communication, the participants said they appreciated that professionals communicate in a simple and direct manner, explaining the reasons for decisions. Similarly, that they felt it was important to receive printed information from professionals which they could peruse later at home. They also said they would like more informative sessions or community groups where these types of subjects could be explained to them and so gain more knowledge about these types of practices.

In our context, this is the first exploratory study done to identify low value practices and the communicative strategies of the citizenry, being the start of a series of studies on the population. Nonetheless, one of the limitations with which we find ourselves was that the participation was lower than expected. Although the term ‘low value practices’ is not known, participants identify situations in which they have experienced them.

Similarly, it is important to underline how patients value the treatment and information received as well as the professional-patient relationship. In the same way, patients recognise the need for a professional’s communication skills and the need for tools to support an effective communicative exchange.

Post written by Johanna Caro Mendivelso (@jmcaro103).

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)