experience – 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.

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.

Time to digitally disconnect?

14 Sep

It is very common to see groups of people looking at their mobile devices in any place at any time: on holiday, at work, at home, in the underground, on the bus, in a congress, ….. wherever. It is also common to take advantage of our holidays to say that we will make the most of these days to disconnect from our routines. Does this include disconnecting our mobile phones, tablets, laptops, the TV or email?

At AQuAS, as an agency involved in health assessment, we do not know this. What we do know is that there is more and more talk of connected health, a term which includes mHealth, eHealth and all related concepts, which have been a part of everyday life for some time now.

At a level of the Catalan system of health, we have in this post by Òscar Solans an example of the development of technological tools which involve new ways of interaction between patients and the health system. In this way, La Meva Salut and eConsult are useful tools when placing the patient, the person that is, at the centre of all the interactions there are with the health professionals coming from different fields.

At a European level, Jean Patrick Mathieu and Rossana Alessandrello wrote about how complex the subjects of interoperability and the implementation of mobile technological solutions are, in this other post. This was the framework for the European project DECIPHER whose goal was to facilitate the access to health information from different countries and health systems.

Let’s change the perspective. At an individual level, who does not have an app downloaded on their mobile phone? Which of these apps have to do with something related to health, such as weight control, for example, or as support when doing physical exercise, to keep track of menstrual cycles, fertility calendars or aspects of mental and emotional health? And no need to limit ourselves to talking about mobile devices: who has not heard of calculators for aspects of health such as calculators of life expectancy?

Downloading an app is very easy and can even be free. In this post by Elisa Puigdomènech, she highlighted the fact that in mid-2016 The Economist explained there were some 165,000 apps related to health. This figure must no doubt have increased.

What does the success of an app depend on? What guarantees of quality and safety do they offer?

Regarding the first question, the user experience was the subject on which Elisa Puigdomènech put the emphasis, based on the experience obtained in the PEGASO project. Along the same lines, Santi Gómez spoke about the fact that the development of a health application must, in all phases of its development, include the participation of those who will ultimately be the end users.

And in terms of the second question, any health intervention should be safe, be based on evidence, on the best quality knowledge available and should be assessable. This is the premise with which we at the AQuAS work and this is the role that an assessment agency can play when thinking about connected health. Thus, this post by Toni Dedéu places the emphasis on the fact that technologists, assessors, professionals and citizens have the opportunity to work together and combine their expertise but not forgetting the speed of innovation.

In conclusion, the assessment of connected health is a current topic. This article was recently published, and is a good example of a proposal for a conceptual framework. We end this post with an editorial about innovation and evidence which invites one to reflect on assessment and innovation.

Post written by Marta Millaret (@MartaMillaret)

Extra motivational bonus and… Let them have fun! Key elements for qualitative research with adolescents

1 Dec

There is no doubt that a qualitative methodology considerably enriches the development and assessment of public health interventions. It is often the ingredient which gives a dish that very special flavour or sometimes is even its main ingredient which, if of quality, makes the dish a real winner.

When both quantitative and qualitative methodologies are applied respectively to the same project, the necessary nutrients are provided to make the project work and can even produce compound molecules of a high nutritional value if applied in combination. The flavours of qualitative methodology acquire specially relevance in the dish when an innovative intervention is being cooked up using new channels of communication to reach the target population. We are talking of the PEGASO Fit for future.

The chefs at the the Agency for Health Quality and Assessment of Catalonia (AQuAS) and those at the Catalan Agency of Public Health (ASPCAT), together with other European chefs, have the PEGASO platform brewing on the stove. Centred around the smartphone, it aims to be a new creative recipe for the promotion of healthy lifestyles among adolescents. Eating habits, physical activity and hours of sleep are the real protagonists of the signature dish which has begun to be served in different secondary education schools in Catalonia, Scotland, England and Italy in the way of different health apps, games and movement sensors.

The PEGASO project is using qualitative methodology in all phases to ensure that the “food” gets to the table successfully and that it be a well-received recipe which spreads out cheerfully and quickly to all kitchens. Thus, the focus groups held with adults and adolescents before the start of pre-pilot phase allowed us to draw up a clear shopping list to get the necessary ingredients before we donned our aprons. Subsequently, and during the 3 stages of the pre-pilot phase, adolescents in several focus groups carved up the different prototypes of the platform’s components after having appraised their quality to decide whether they should be included in the recipe or not.

But what are the key elements for qualitative research with adolescents? A focus group with adolescents is an intense activity which is worth doing. In fact, in the pre-pilot phase of the PEGASO project, we had the opportunity to lead teams in different schools; Nou Patufet school in Barcelona, Verge de la Salut de Sant Feliu de Llobregat and IES Ramón de la Torre in Torredembarra. These teams were made up of wonderful players that converted each match into a real show. To be able to see thrilling sporting events, we used the extra motivational bonus before each match. This is the first key element for qualitative research with adolescents.

The setting up of a group is essential for its later development and just like a pep talk in the locker room, the tactics of the game were explained in a simple way and the importance of each individual’s contribution to working as a team was highlighted. Additionally, and also prior to setting up groups, the importance given by the PEGASO project that participants choose their best skills while also enjoying the match was highlighted. In this way, the players gave their best at all times leaving the supporters dumbstruck from minute 1.

When dealing with highly motivated groups, the coach has no need to scream and shout from the sideline but rather just guide the team with a simple gesture so that it can progressively achieve the pre-established objectives. In this way, spectacular goals are scored which surprise everyone, including the coach and technical staff. This is pretty much what happened to the PEGASO team where good communication and the initial extra motivational bonus helped great sporting events of two or more hours to take place.

In the focus groups of the PEGASO project, the dribbling and passing between participants has been constant and at an individual level, enjoyment was apparent. This is the second key element in qualitative research with adolescents: that they enjoy themselves. If this is achieved, a group of adolescents can get to wherever they want with endless energy. In this way, attributes which collective imagination often assigns to the adolescent population such as passiveness or a lack of interest have been totally ousted and annulled by freshness, creativity and the urge to participate. Undoubtedly, as Jaume Funes would say, the adolescents who have participated in the PEGASO project have been unbearably charming; and I would add, extremely funny and insatiable players.

And after a hard workout, to bed ….! All the information provided by adolescent genius must be given the chance to rest. Rest after an activity is also a nutritious element. A calm demeanour after the adequate hours of sleep enables one to carry out a qualitative in-depth analysis. It is under these conditions that an outcomes report can be written which gives value to the development of the intervention that, as we have already commented, aims to promote a healthy diet, physical activity and rest. The PEGASO project aspires to be a useful tool in promoting these healthy habits among adolescents. Have a good day, a good match and good night!

Post written by Santi Gómez, AQuAS-APSCAT.

This text are part of a series of posts about qualitative research started at the Ibero-American Congress of Qualitative Health Research which was held in Barcelona several months ago. The other posts in the series are: Utilities and challenges of applying qualitative methodology in community health projects written by Dolors Rodríguez-Arjona and Broadening perspectives in health service assessment written by Vicky Serra-Sutton.

Broadening perspectives in health service assessment

8 Sep

What lies behind a significant volume of hospital readmissions? What makes a service present a good healthcare praxis? What obstacles are there when changing to a healthcare model such as in major out-patient surgery which encourages patients to go home on the same day as their operation? Do managers and nursing staff have the same opinion about what efficiency is in an operating theatre? What is the perception of professionals of the possible benefits of people-centred attention?

Do we all see a dragon?

Drac

Reality is complex and therefore approaches are needed which facilitate the interpretation and understanding of that reality. With qualitative research, places can be reached otherwise unattainable when using other methodological aproximations. When answering questions like those we asked ourselves previously, a truly qualitative approach is required. We need to make the approach using an adequate and credible technique to validate the process of all those involved and to ensure precision in results as is done in quantitative research but not forgetting that we need to be critical and independent in the analysis made.

We will briefly outline the evolution of the qualitative approaches in the context of the assessment of health services. A reflection on the usefulness of qualitative techniques in the assessment of health services or medical technologies is not a new one and you can find a series on this subject in the British Medical Journal of 1995 and in the Health Technology Assessment report of 1998.

bmj-1995-eng

Health assessment agencies have given great importance to questions about the scientific evidence available when talking about the efficiency and safety of treatments and biomedical interventions of a clinical nature. Randomized controlled trials and systematic reviews are considered to be the reference standards for causal atributions of the benefits of an intervention for the improvement in the health status of patients.

Society has evolved and the needs of the system adapt to this. We formulate new questions related to the preferences and expectations of users facing treatment and how different professionals contribute to providing better results in patient health care. One must bear in mind that when assessing the benefits and results of attention given, many factors come into play.

In this context, the paradigm of evidence based medicine and the supposed superiority of quantitative approaches and of some study designs above others, have created obstacles in the application of qualitative research. In this sense, the letter to the editors of the British Medical Journal signed by more than 70 researchers of reference for giving their support to qualitative research is clear proof of this remaining obstacle.

bmj-2016-eng

Questioning the efficacy of a medical drug cannot be answered using a qualitative approach but we can broaden the scope of questions that we pose ourselves.

For example, we can consider asking ourselves questions, among others, about the preferences of patients, the perception of the benefits of a medical drug, the expectations or opinion of professionals that prescribe it or the possible reasons for a low adherence of the medical drug.

Another scenario could be that of a patient with osteoarthritis who has undergone a knee replacement (arthroplasty) and who is being attended by several professionals such as the primary care doctor, the traumatologist surgeon, the anaesthetist, the nurse, the physiotherapist and other professionals if the patient has other comorbidities. That patient has certain preferences and expectations which need to be understood and then give the health care to cover those needs, which can go beyond the mere surgical procedure.

With qualitative research we develop a discourse, texts, opinions and perceptions of people, communities, with images, perspectives, ideologies and complexities. We must guarantee rigour and that the photograph and interpretation of reality that we make remain valid and coherent for the research group and the populaton or group of people that we are assessing.

The application of qualitative techniques has been on the rise using interviews, semi-structured questionnaires, field notes, focus or discussion groups to gather the opinion of different groups of professionals and users.

From my point of view, there are three examples which can be of great use to know the approach and the process in carrying out an assessment of services with a qualitative approach:

Avoiding the classic metrics means being able to measure in an alternative or complementary way by combining different approaches be they qualitative or quantitative. I find the introduction to qualitative research we find in René Brown’s TED talk the power of vulnerability. This qualitative researcher recommends we measure that which is apparently unmeasurable and go more in depth into the complex phenomenon of vulnerabilty.

We broaden perspectives by understanding the reality from within, by bearing in mind the multiple existing points of view to improve that which is disfunctional or by identifying better practices to spread them. We can measure what we want to measure. It will be necessary to adapt the approach to the context and audiences and to continue progressing to show with rigour and practice the usefulness of qualitative approaches.

We continue learning. This time, it has been at the Congrés Iberoamericà de Recerca Qualitativa en Salut (in Twitter #IICS2016) held in Barcelona, 5-7 September. The Agència de Qualitat i Avaluació Sanitàries de Catalunya (AQuAS) and the Agència de Salut Pública de Catalunya (ASPCAT) shared the stand to explain their experiences.

2016 Congreso Iberoamericano de Investigación Cualitativa en Salud — Santi Gómez Santos (AQuAS/ASPCAT), Dolors Rodríguez Arjona (ASPCAT), Mireia Espallargues (AQuAS), Vicky Serra-Sutton (AQuAS)

Post written by Vicky Serra-Sutton (@vserrasutton), sociologist PhD in AQuAS.

Real Time Delphi relating to chronicity

2 Jun

The Real Time Delphi method, which implements the functionality of the Internet to make the Delphi Method more flexible, efficient and transparent, has been used by the Agency for Health Quality and Assessment of Catalonia (AQuAS as per the Catalan synonym) to identify the indicators for evaluating chronicity care and for the management of the areas of improvement in this field.

¿What is the Delphi method? It is a structured communication technique which is based on a panel of experts who answers questionnaires in two or more rounds. After each round, a facilitator provides a summary of what the experts have said in the previous round. Successive rounds are intended to reach a consensus on the subject. The Delphi method is applied to make predictions about the future and, in general, for any issue when a scientific approach is not possible. When the Delphi method is online (Real Time Delphi) the responses of the participants are calculated automatically and many variants of the method can be entered in a controlled way.

Health Consensus

The Health Consensus application that facilitates the participation of professionals through a methodology of online consensus developed by the company Onsanity from research done at the Universitat Politècnica de Catalunya (UPC) in Barcelona was used to identify the most appropriate indicators.

The work was carried out in the years 2013-2014, the first prototype of the system was applied twice, first in Catalonia, and a second version in the context of all the Spanish health system. The Health Consensus application for the selection of indicators allowed for the collecting of contributions from more than 800 health professionals, including clinical profiles of management and planning. An initial list of 215 indicators was progressively reduced through successive rounds of consensus until it was reduced to 18.

Not only did this experience allow the the identification of indicators, but it also showed various aspects that are interesting for research and innovation:

It is possible to pool the tacit knowledge of a fairly large group of professionals, putting together experiences and different points of view.
The professionals underscore their perception that the contributions that are made, are highly valuable in the construction of the model subjected to consensus.
The online system is accepted by the professionals who expressed a high satisfaction level during the participation process.

The experience was published: Monguet JM, Trejo A, Martí T, Espallargues M, Serra-Sutton V, Escarrabill J. Assessment of chronic health care through and Internet consensus tool. IGI Global; 2015.

Post written by Josep Mª Monguet (@JM_Monguet), UPC Professor.

Digital journalism and health data: data visualisation tools

12 May

This 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, import.io, 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 Foter.com / CC BY)