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.

Digital journalism and health data: data visualisation tools

12 May

Taller-aulaThis coming 7th June will take place the second edition of the course titled II Workshop on data Visualisation for healthcare technicians and scientific journalism in an effort to jointly work with tools which make health data more visible and user-friendly. You can register for the course, but beforehand, we would like to present a short report of the topics covered in last year’s edition.

The course was divided into two very different parts: firstly, Eva Domínguez chaired a general discussion about digital journalism media and secondly, Paula Guisado focused on procedures, tools and applications within the area of health data.

When we refer to digital journalism, we are referring to some of the emerging traits for instance new narrative styles, such as immersion, audiovisual development, adapting the varying content to the most suitable format and hybridisation.

Beyond these characteristics we might be led to believe that becoming viral is a very common concept associated with everything digital but the questions remain: Does everybody want, and does everybody have the capacity to generate viral content?

Regardless of the objective, well-known successful factors can be analysed and utilised when deemed adequate by adapting them to the desired objective and context. Certain recommendations in this area reference classic ideas such as emotio (being capable of generating an emotion amongst your audience), universality (a “universally” identifiable concept might be successful) and brevity (eliminating superfluous elements for transmitting the key message).

In practise, how can all this be achieved?

We can approach the idea of universality for example by trying to explain short stories which become big. With regard to generating emotion, the basic idea is to awaken empathy in the reader. From this point onwards, total freedom and creativity and a proposal for working: we must question every technique in an aim to surprise the audience and we must do all this without losing sight of the fact that “Content is King“. Not everything has to be interactive, but we do have to think carefully about what we want to explain and how we wish to go about it.

More ideas. Interactive tools which enable us to identify ourselves work extremely well, whether this is a quantitative or qualitative identification.

Another compelling element is to involve the audience in the story. How can we achieve this goal? The following strategies can be used:

•    Transmedia / Multiplatform. Confusion might arise as to whether the end product is a report, a data base, a creative project, a project designed to raise awareness, activism or serialisation. The Spanish serie El Ministerio del Tiempo, for example, has taken a lot out of this.

•    Serialisation. Fragmenting information into “chapters” o “instalments”. This can be addictive when performed well. Example: Serial Podcast has managed to create a community of fans explaining a journalistic investigation by weekly deliveries.

•    Creating an experience. By way of navigation it is possible to establish a connection with the user in such a way that navigation becomes a factor for immersion. Example: ViceNews about Ebola (Wired).

•    Immersion through navigation (or immersion in the area). Interactive tools where the user places themselves inside the story. It is the case of this application of virtual reality that simulates that you are in the Roman Tarraco.

•    Let the user participate and find elements that must be discovered. Play, the operative word here, with the fun element of the game … or with the fear element as in Take this lollipop.

•    Constructing a story within the story. Example: documentary film Mujeres en venta.

•    Immersion narratives in the first person. The aim is to give visibility to large documentaries. Format of the “docu-game”. Example: The refugee project.

•    “Make it personal”. A close personal approach tends to work well. Example: Do not track regarding data privacy.

The second part of the course, which revolved around the applications to health data, got underway with a fascinating reflection: journalism with data is not data journalism (The Guardian 2011).

Massive analysis by computational means is the defining characteristic of data journalism. From this point onwards we can see specific patterns and tools:

•    Datamining. Tools such as scrapping: tabula,, kimono labs

•    Data visualisation tools: adobe edge, hype tumult, cartoDB, datawrapper, infogram, odyssey.js, juxtapose.js

•    Data cleanup and transformation: Excel, Open Refine

•    Other tools: Tableau, Tableau public, Quadrigam (in the beta phase at the time of the course)

•    Final recommendations (unusual ones): Remove to improve, Spurius correlations

We look forward to seeing you for the second edition of the course, which like the first, aims to act as an incentive for innovation and professional development based on the sharing of knowledge and a range of tools between professionals whose objective is to collect the public’s health data, in the best way possible.

You can also see the course information in the web of the Catalan Association on Scientific Comunication, about the 2015 edition and the 2016 edition.

Post written by Marta Millaret (@martamillaret) and Cristina Ribas (@cristinaribas), president of the Catalan Association of Scientific Communication (ACCC).

(Photo credit: dcJohn via / CC BY)