Medical information in the press and the doctor-patient relationship

15 Feb
Gaietà Permanyer

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 21st 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.

To drip or not to drip (and thus, ship); that is the question!!

14 Dec
Sònia Abilleira

The proof given in 2015 of the efficacy of a mechanical thrombectomy in patients suffering from a severe ischemic stroke caused by a large vessel occlusion in the brain represents a change of paradigm because it forces us to reconsider the organised systems of care for people suffering from a severe stroke.

These models of organisation, or systems of stroke code as they are known in our environment, started being developed at the end of the 90s and beginning of the year 2000 in response to the evident difficulties observed in accessing intravenous thrombolytic therapy, a highly time dependent treatment, eminently due to the delay of the arrival of patients at emergency services.

Rightly, these difficulties were overcome by developing organised systems of care where a protocol was established for the rapid transfer of these patients to specially designated and previously alerted hospitals equipped to manage these cases expertly.

Recently, we have scientific evidence that establishes that a mechanical thrombectomy is the new therapeutic standard in the case of strokes caused by large vessel occlusion in the brain, clinically more severe, where the effect of intravenous thrombolysis is very limited (30% maximum rates of revascularisation). A mechanical thrombectomy, however, is a highly specialised and complex treatment that needs to be undertaken as quickly as possible in centres with advanced technology to guarantee adequate results.

This recentralising tendency in carrying out endovascular treatment contrasts with the decentralisation which was done in its day to ensure an adequate access to thrombolytic therapy which by nature needs to be administered in the first 4,5 hours after the onset of symptoms. This is why nowadays we talk about a change of paradigm to refer to the obsolescence of the models in stroke care developed in the era of thrombolysis, now that we are fully in the thrombectomy era.

The situation today is even more complex if we bear in mind what the mechanical thrombectomy trials established: that endovascular therapy was better than medical treatment, including intravenous thrombolysis. As a result, the current standard of care establishes that, with patients having no contraindications for thrombolytic treatment, this care must be given as soon as possible before a thrombectomy.

In urban metropolitan areas, mostly served by hospitals with the capacity of carrying out both treatments, the translation of the results of trials to clinical practice does not pose a problem.

However, the question is: what needs to be done when there is a stroke in one of the areas primarily covered by centres without endovascular capacity? Should we hold the patient back in the nearest stroke hospital, and in this way prioritise intravenous thrombolysis, even if by taking this decision we are in fact delaying the arrival of the patient at the tertiary stroke centre, the only one with the capacity of carrying out a thrombectomy? Or should we transfer these patients directly to the tertiary stroke centre with the understanding that a thrombectomy is the only valid therapeutic option in these cases, even if this means delaying or disregarding intravenous thrombolysis?

This is, in fact, the controversy between the “drip-and-ship” model which prioritises thrombolysis, and the “mother-ship” model which adopts the opposite approach and defends the direct transfer to a tertiary hospital where the entire process of care can be performed: from an ultra-rapid diagnosis to whatever type of reperfusion treatment.

If that weren’t enough, one must bear in mind that these models are based on the prehospitalisation selection of patients strongly suspected of having a stroke but without confirmation or diagnosis, nor of the subtypes of stroke, ischemic or haemorrhagic.

At present, we do not have the necessary evidence to prioritise the transfer of patients with acute stroke following either the “drip-and-ship” or the “mother-ship” protocol and this is why the RACECAT (NCT02795962) is being carried out in Catalonia since the beginning of 2017 which aims to provide answers to this controversy.

This study has been made possible thanks to the effort of a large number of health professionals: from those in charge of prehospital care (SEM/112), specially trained in the use of the RACE scale (a scale to assess the gravity of stroke and, therefore, those cases with a higher probability of having a large vessel occlusion and susceptible to being treated with mechanical thrombectomy), to the people in charge of care in each of the 26 hospitals in the stroke code network in Catalonia. Would you like to know more? Then you must watch this video.

The RACECAT trial is being carried out at present and in a couple of years, the evidence obtained from this study will allow us to modify the circuits of care in the case of a serious stroke code and so be able offer the greatest clinical benefit to these patients.

Post written by Sònia Abilleira.

Consulting the library from any place

19 Oct
Marta Millaret

Times change and sometimes we are not fully informed on the latest developments and facilities we have at our disposal. Nowadays, the staff at AQuAS can access the contents of the  Library of Health Sciences of Catalonia in a virtual manner which is very good news.

The library is a support tool for all researchers and technicians. Having access to available resources from any place is a step forward, leaving behind the model of being tied to an intranet to be able to access all the resources of the library.

Knowing that these tools exist and that they can be accessed from any place nowadays can be very useful at a particular time when researchers from AQuAS might need to use them.

We would like to present some interesting developments of the library:

Virtual Library of the Public Health System of Catalonia. It facilitates the access to the bibliographic services and resources of the Library of Health Sciences of Catalonia. Professionals that work in the general public health sector have access to the bibliographic resources that the Health Department subsidises for the entity they work for.

The professionals at AQuAS have the opportunity to register (with a user name provided by the institution) and can thus access all the bibliographic contents that are available from any physical location and device.

These available resources include e-magazines, e-books, bibliographic data bases, thematic bibliographies, the catalogue of the bibliographic funds in print of the Library, Scientia (digital information deposit of the Department of Health), collections of clinical practice guidebooks, of health legislation and health news, reference works, the press and electronic summaries.

You only need to register. By doing so, professionals at AQuAS can access a systematic review of the Cochrane Library, for example, or an article from the magazine Gaceta Sanitaria, an article from The Lancet or an article from the magazine Health Research Policy and Systems, all from any place.

Scientia. It is the institutional repository of the Department of Health. It was created with a view of storing and making the scientific production of the entities of the general public health sector of Catalonia openly accessible with the aim thereby of fostering accessibility, visibility, impact and recognition.

Presently, you can find publications from the Health Department, CatSalut and AQuAS, three of the entities which have already signed an agreement of participation.

The added value that this repository offers is the search and retrieval of results in three languages (Catalan, Spanish and English), a permanent URL of each publication, a standardised bibliographic citation and the impact index in social networks (Almetrics). The ORCID identification of each author is also included.

There are many ways you can stay informed of the latest developments which are published: by syndicating contents (RSS) available in the different sections of Scientia and from Twitter; by means of the hashtag #publicaDSalut or following the account of the library @bibliotecasalut.

One of the main aims of this tool is the safekeeping of the scientific production generated in the area of health and its effective dissemination.

An example of a search of studies and technical reports of the AQuAS in Scientia, by author:

Inquiro. It is what is known as a “discovery tool”, an intelligent tool which searches and explores within the contents of all the bibliographic, digital and printed resources available in the library stemming from a simple question using natural language.

The results that are obtained can be filtered by type of document, access (complete text or bibliographic citation), chronological period, subject and resource.

The most potent feature is that the results are obtained organised in order of relevance or by date. There is also the option of using an advanced search, and refining the search by fields, using Boolean operators (AND OR NOT).

Having a single gateway of access to all the bibliographic resources of the library, being able to explore the content of all these resources at the same time and filtering the contents organised in order of relevance is the major new development.

Example of a search for “indicators” with the results organised in order of relevance:

Example of a search for “inequalities” with the results ordered by date:

Ask us. This is the user services department and reference of the Library for Health Science of Catalonia. This tool is very practical to make a search and the answer is practically immediate. It is well worth knowing that this service exists!

That is all, for today. We are completely sure that all these tools are very useful and that they are the results of a concerted effort by the library to give answers to users, technicians and researchers that carry out research in our field.

Post written by Marta Millaret (@MartaMillaret) with the collaboration of Toni Parada and Pilar Roqué, head of the Library of Health Sciences of Catalonia (Biblioteca de Ciències de la Salut de Catalunya).

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)

Double health insurance cover

20 Apr
Lluís Bohígas

A double health insurance cover occurs when a person that has the right to public healthcare also has a private health insurance which allows them to receive private health services. Anyone can go to private health services if they pay from their own pocket but it is only defined as a double insurance cover when one has taken out a specific private health insurance. The population has a right to healthcare because they have contributed to social security – or they may find themselves in any one of the contexts that gives them the right to access – and this covers almost the entire population but not all; there is a segment that does not have the right to public healthcare and only has private cover if they purchase an insurance.

In the 80s of last century, the self-employed were not covered by social security and the majority had a private insurance. At that time, in Catalonia the Quinta de Salut l’Aliança was very popular. Ernest Lluch, the Minister of Health, made it compulsory for the social security to offer healthcare to the self-employed and, all of a sudden, many of those insured by l’Aliança found themselves having a double insurance. Some left l’Aliança but others stayed on. The public healthcare system and the majority of insurance companies only cover a basic part of dental healthcare. If you want a wider dental healthcare cover you need to purchase a specific insurance. This insurance is not considered to be double cover because it does not cover the services which are covered by the public insurance.

In 2014, the Generalitat recorded 2.032.911 people with a health insurance in Catalonia but not all had double cover. State civil servants and their families can choose to be attended by the autonomous community or by a private insurance and 80%, 160.815, choose private healthcare and so they do not have double cover. The difference between the total number of insured and the civil servants that have chosen a private insurance are 1.872.096 people; that is, 24,9% of the population has double cover.

Why do one out of every four Catalans buy a private health insurance, despite having the right to public healthcare?

There are several reasons for this. On the one hand, a private insurance gives them access to private health centres and to independent doctors who are sometimes doctors that work in a public centre in the morning and a private centre in the afternoon. In the afternoon, one can choose the doctor that it wasn’t possible to choose in the morning. Another reason is waiting times. Private centres and independent doctors have shorter waiting times than in public centres. And another frequent argument is that private doctors spend more time on each patient and that private centres provide better attention to patients.

These are the reasons that have usually been given to justify a person spending more than 700€ a year on average on a private insurance to benefit from services they in fact have access to in the public system.

But there are also other arguments. One is to see an insurance as a salary paid in kind and another is the response people have to cuts in public health. Some companies give their employees a private insurance as a complement to their salaries, partly for tax reasons but also as an incentive for some employees and for managers. 31,6% of people insured in Catalonia in 2014 were insured by their companies.

During the period 2009-2013, while cuts were being made in public health, health insurance companies grew in Catalonia and in Spain as a whole. During this period the insurance companies raised their rates quite considerably but despite this rise, and despite a decrease in the purchasing power of families, health insurance policies didn´t so much as become cheaper but rather increased in price.

More women than men have a double cover, are between 45 and 64, have a university qualification and belong to the upper social class according to the Generalitat’s health survey. Notwithstanding, 11% are older than 75 and 10% have no higher education qualifications or only have primary education and 11,5% belong to the lower social class.

The Generalitat’s statistics tell us which services are paid for privately in hospitals. Thus, for example, 31% of births are private and a large part of surgery is private: 35% of elective surgery and 25,8% of major outpatient surgery. 26% of hospital admissions and 21% of emergencies are also private.

Some of these private services in hospitals are paid for directly by the user but the greater part is financed by health insurances. Statistics only provide us with information of hospital services but it is probable that the private part is even greater in visits to doctors and other services.

Proposals have been made in the past to offer tax incentives to people purchasing a private insurance who waive their right to have access to public services. The aim would be to reduce waiting lists in the public system. I do not think that this would work because the majority of people that have a double cover do not relinquish access to public services but rather want to be able to choose between receiving private or public care.

Double cover is a stable data in the Catalan health system. It already existed when INSALUD managed public health and continues to exist. The number of insured may vary in time but the phenomenon is constant: an important part of the population, those who can afford it, prefer being able to choose between public or private healthcare.

Nowadays, one needs the other: if there were no private healthcare, the public system would collapse; if there was not a public system, the private sector would be incapable of providing the care it does at the price it does. The usual discourse is an ideological criticism of the other, the public system criticises the private and vice versa. I think it would be better for Catalan health as a whole to reach an agreement.

Post written by Lluís Bohígas (@bohigasl), economist.

Is it possible to combine active and healthy ageing with innovation?

22 Dec
toni-dedeu
Toni Dedéu

The European Innovation Partnership on Active & Healthy Ageing (EIPonAHA) is an initiative of the European Commission to deal strategically with the social challenges associated to active and healthy ageing, to make good practices in innovation more visible and to facilitate exchanges between regions, all of which promote interregional cooperation and the value of excellence.

What is its aim? To improve the health and quality of life of Europeans, especially of people older than 65, and to give support to the sustainability and efficiency of health and social care systems in the long term as well as to enhance the competitiveness of EU industry through expansion in new markets.

The reflection on how health systems interact with an ageing population and care in chronicity has been been one of the main lines followed in the AQuAS blog during 2016; they are subjects that affect our society and, precisely because of this, are part of the Health agenda.

In this context, having links to European projects is fundamental, where networking, collaborative projects and assessment are absolutely essential.

eiponaha

This is the underlying idea of the Reference Sites awards which assess regional European health ecosystems based on four axes:

  1. Political, organisational, technological and financial willingness for an innovative approach to active and healthy ageing
  2. The capacity to share knowledge and resources for innovation
  3. Contributiing to European cooperation and transferability of own practices
  4. Providing evidence of positive impact

The status of “Reference Site” is awarded to systems, alliances and ecosystems in health which comprise different players at a regional European level (government authorities, hospitals and care organisations, the health industry, SMEs and start-ups, research and innovation organisations and civil society) which have invested in developing and implementing innovative-based approaches to active and healthy ageing. These practices must be carried out with a comprehensive approach and vision and proof of the impact of their results must be provided.

Four stars is the highest distinction awarded by EIP on AHA and this is the score obtained by Catalonia as a leading health ecosystem and a reference for institutions and European organisations in the area of innovation in active and healthy ageing. These factors encourage the internationalisation and visibility of the Catalan health system and at the same time increase the possibilities for creating initiatives and forming consortiums for collaborative work with other European regions.

Being self-critical of the  different health systems is as important as the knowledge and recognition of one’s own strengths and values. Sharing this is a way of acknowledging the involvement and work done by many professionals. We do not work in isolation; as a whole, this work has involved and involves AQuAS, the Fundació TicSalut, the HUBc (Health University of the Barcelona Campus), the ICS  (Catalan Health Institut),  the IDIAP Jordi Gol (Institute for Research in Primary Care), the Pere Mata Institute, the IRB Lleida (Biomedical Research Institution of Lleida), the VHIR (Vall d’Hebron Institut de Recerca), the Consorci Sanitari del Garraf  and the Institut Guttmann.

Last 7 December in Brussels, on behalf of the Department of Health, I received the award for the Catalonia Reference Site group given by the European Commission. It is relevant because this fact defines Catalonia as one of the most dynamic and leading European regions in number and quality of initiatives, investment and results in generating and implementing innovative solutions to resolving problems in care and health to elderly people, chronic patients and other groups of risk patients.

The fact that Catalonia has obtained this distinction from the European Commission has a very clear meaning: Catalonia is recognised as one of the leading European regions regarding active and healthy ageing and innovation.

On we go.

Post written by Toni Dedéu (@Toni_Dedeu), Managing Director of AQuAS.

The Observatory, gateway to health open data

14 Apr

Núvol Open dataThe information generated by the interaction of citizens and the healthcare system keeps increasing in size. Just to get an idea, last year, only in Catalonia there were nearly 45 million consultations in primary care centres, more than 700.000 patients were hospitalised, and over 150 million prescriptions were made. However, there is much more stored in administrative records (diagnostic tests, medical imaging, hospital prescriptions, expenditures, etc.) which are kept and managed in large databases. Government officials are responsible for the safe keeping of this information, and it may use it to improve the quality of healthcare and for healthcare planning purposes.

Furthermore, advances in the development, interoperability and crosslinking of the different information systems are making it easier to gather a large amount of data that will contribute to better characterise both the general and the patient population, and they are essential to assess the results of healthcare policies.

There is a wealth of opportunities with the increasing amount of data, all of them available in electronic formats and with more quality, and with the better linking between administrative databases. Thus, the information gathered leads to new ways of generating knowledge, especially when multiple data sources are combined (genetic, environmental, socio-economic, etc.) and made available to the citizens.

This turns information into a valuable asset for planning and assessment, but also for third parties, especially in research and in initiatives aimed at enhancing the use of open data.

Open data are a actually a philosophy, as they represent a practice that encourages the free access of data for everyone, without technical limitations. This means that the original files containing the data are available to the public in the most structured way as possible. This enables any computer system to read them, and even to easily develop software based on them.

This trend towards freeing the access to data is parallel to the need of the Catalan healthcare system of managing the whole life cycle of information, from the generation of information to the knowledge dissemination.

Information and communication technologies, and information systems become key strategic allies to achieve the above objectives, and to succeed in the integration, transparency, assessment and accountability by the healthcare system and its different actors.

In the case of Catalonia, the Autonomous Government is committed to a progressive disclosure of the available public data while respecting the privacy, safety and property limitations applicable in each case through the Open Data portal, where all data are indexed and characterised. This is done following the international trends regarding the disclosure of public data, and it counts with the advice from the W3C experts (World Wide Web Consortium).

The Department of Health is thus also joining the initiative of supporting free access to data and public information. This will enable to further advance towards an open government system, based on the values of transparency, service and efficiency, on promoting the generation of value through reusing public information, on easing the internal organisation of the information systems, and on fostering interoperability among the components of the healthcare system.

The Catalan Health System Observatory collaborates in this project by favouring the knowledge about the healthcare sector in Catalonia, and by supplying the citizens with health information to assess the healthcare system itself, to support decision-making and to favour transparency and accountability. With this objective, the Observatory is strongly determined to unveil to the general public all the information regarding their healthcare system. Along with other products, the Observatory publishes on its website a set of health and healthcare activity indicators, consisting of texts, charts and open data files.

Catalan Health System Observatory

Additionally, all the data published in the Observatory reports (Results Centre, Crisis & health, etc.) are also available to the public as open data formats and infographics.  Finally, the Observatory website provides a link to the open data portal and a collection of health open data available up to date.

Check the open data available at the Observatory website!

Open data gencat - open health data

 

Post written by Montse Mias (@mmias70) and Anna García-Altés (@annagaal).