Health data: Do we give citizens what they want?

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

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

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

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

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

infografia-atencio-primaria

 

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

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

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

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

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

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

Atlas of Variations in Medical Practice in the National Health System

17 Nov

atlas-vpmOver the last decade, an increase of international initiatives aimed at analysing the variability in practice or the variability in the performance of health systems in a more or less systematic way has been confirmed. The most significant experiences have been carried out in contexts having a deep-rooted culture in assessment and in systems in which the choice of insurers and the competition among providers are one of their most characteristic features. (This table shows some of these experiences). The calling of these initiatives has been, and is, to facilitate public debate on the importance and impact of unjustified variability in healthcare. However, it has been in the last few years, a time spurred on by the economic crisis, that the term value for money has gained greatest significance. It is in this same period that the representation of variations in practice has acquired new interest and its usage has begun to guide decisions on financing or disinvestment among other things.

In Spain, the Atlas of Variations in Medical Practice in the National Health System, also known as Atlas VPM, is a pioneering initiative in Europe which was developed somewhere between research in healthcare services (1) and the support given to public decisions. For the last fifteen years, Atlas VPM has been systematically analysing the performance of the 17 health systems that make up the Spanish Healthcare System. The variations in diverse surgical procedures have in this way come under scrutiny as have those in oncology and orthopaedics, in the variability of hospitalisations in risk populations (chronic patients or mental health patients), in the variation in the treatment of certain pathologies such as coronary heart disease or cerebrovascular ischaemic disease, or in hospital care received by population subgroups such as children or the aged.

Atlas of variations of procedures of questionable value

The “Atlas of unjustified variations in procedures of questionable value”  is the latest Atlas of the series and provides a local context for the aforementioned value for money. This project was created in 2013 as a combined initiative between the Atlas VPM and the National Network of Health Technology Assessment Agencies, with the goal of supporting a national strategy aimed at reducing the use of questionable value procedures by encouraging the use of better alternatives or by redirecting resources to other more cost-effective activities.

Ideally, this Atlas establishes an empirical and dynamic performance target by using real terms of comparison obtained in similar health environments and by highlighting margins for improvement for each provider as well as making learning among peers possible when designing strategies for corrective adjustments.

***

After almost fifteen years since the project was launched, ten Atlases have been generated (in different formats) as well as innumerable thematic and methodological articles. Nevertheless, the impact of these research efforts goes beyond merely having created an awareness of the existence of a serious problem difficult to resolve; 1) the provision of services in Spain does not seem to follow a pattern related to the health needs of the population so that the access to effective healthcare and insurance seems to depend on one’s place of residence; 2) the marginal cost incurred when providing services often exceeds the marginal benefits of these; 3) the place where a service is provided is decisive in the health results a patient obtains as well as in the associated cost.

On the contrary, the Atlas VPM has also fostered the translation of these results into the arena of healthcare policies. We congratulate ourselves that AQuAS, with whom we have maintained a close collaboration over the years, is leading the creation of an Atlas for Catalonia. This is the first initiative that has, within the context of the National Health System in Spain, institutionalised the study of unjustified variability in healthcare.

(1) Atlas VPM originated and gained momentum within the much missed Network of Research in Results and Healthcare Services (RED IRYSS), coordinated at the time by AATRM under the guidance of Salvador Peiró finding inspiration in an epistemological and methodological approach known as The Dartmouth Atlas of Healthcare Quality.

Post written by Enrique Bernal-Delgado and Sandra García-Armesto for the Atlas VPM group. Unidad de Investigación en Servicios y Políticas de Salud. Instituto Aragonés de Ciencias de la Salud.

If this subject is of interest to you, a related event, Jornada de presentació dels Atles de variacions de la pràctica clínica del SISCAT, will take place in Barcelona next Monday 21 November. The aim of this event is to present publicly SISCAT’s Atlas  of variations in medical practice and to promote its value for professionals as a tool in the management and assessment of the healthcare system.

Indicators for assessing care for chronicity

10 Nov

In a previous post we discussed the advantages of using indicators in the assessment of health services. At AQuAS we have been applying indicators to assess different care processes and areas, with care for patients suffering from chronic conditions being one of the principal areas of interest in terms of new care models and programs assessment. Interventions in the field of care for chronicity are extremely complex given that by their very nature, they tend to involve multiple actors and many different levels of care concurrently, as well as different elements utilising therapeutic instruments and technology with very variable intensity. Moreover, their effectiveness is often linked to contextual factors, making it difficult to attribute an outcome to a particular component of the program. So, given this level of complexity, the question remains, why should we be using indicators in this area? The answer is that these indicators may provide us with several benefits compared to other assessment approaches, such as:

  • Incorporating professional opinion and consensus
  • The possibility of including structural and procedural indicators allows us to obtain an understanding of the environment and the reality in which the initiative is being implemented
  • Providing a type of assessment that is more accessible and understandable for professionals
  • Greater simplicity and speed in evaluation and obtaining results
  • Possibility of defining standards
  • Allowing comparisons to be established and objectifying trends
  • Identifying successful characteristics and factors that can define which models are most effective, for which groups of chronic patients, in what context and at what cost

The first project in which AQuAS began using quality of care indicators for assessing chronicity got underway in 2012 with the commission by the Program for Prevention and Care for Chronicity (PPAC) to define a set of indicators to assess the quality of integrated care programs for chronicity within the health sector, where an ‘integrated program’ is understood as those programs involving the coordinated participation of different levels of care. Following the methodology described in the previous post (review of literature, establishing a theoretical framework and expert opinions) a total of 18 indicators were obtained, mainly from intermediate and final results, which experts considered relevant and feasible for assess these types of programs and which are currently being implemented (see table 1 and web).

Table 1: Indicators assessed as relevant and feasible for evaluating integrated care programs for chronicity

indicadors-2-en-1

From this experience, AQuAS developed a proposal for indicators, published recently to, assess chronic care as part of the strategy for tackling chronicity within the National Health System. As a result of this work, a set of indicators considered to be crucial for evaluation emerged, which included several previously prioritized indicators which are repeated such as polymedication, avoidable readmissions and hospitalisations, but which incorporates new factors which are more closely associated with the patients’ experience, such as the assessment of the patients’ and carers’ quality of life, or patients’ lifestyles (see Table 2).

Table 2: Proposal for prioritized indicators for promoting more uniform measurement of the entire National Health System for evaluating of chronicity care strategies

indicadors-2-en-2

Later, from 2014 onwards, the Catalan Institute of Healthcare and Social Services (ICASS – Dpt. Social Welfare and Family) and the PPAC (Health Dept.), commissioned extensive work to be carried out in evaluating collaborative social and health care models in Catalonia. These models not only consider the different levels of care in the health system but also include social services, a crucial aspect in caring for patients in this category. The objectives of the project were to outline the organization and operations of these collaborative experiences, identify barriers and facilitators, propose a conceptual framework for assessment and define a set of well-founded indicators based on feedback from participants and the expertise acquired from previous assessment studies. The proposed indicators continue to take into account traditional indicators while consolidating assessment that includes the views of those involved, not just the patient, but also the caregivers and professionals, and placing special emphasis on the evaluation of the coordinated actions of healthcare and social services, for example considering the avoidance of duplicate processes or carrying out joint social and healthcare initiatives.

We must also highlight in this line of work the efforts undertaken by the ITES FORUM (Forum of innovation, transformation and excellence in health and social services) to define a joint health and social services evaluation framework with a proposal of indicators (line L6) and in which AQuAS is also involved jointly with professionals from different fields. The Forum is a tool to facilitate the necessary conceptual debate required for transforming existing social services and healthcare in favour of a new model of integrated care.

Finally, and to continue discussing the area of assessing the integration of health and social services, since 2015 AQuAS has been involved in the Horizon2020 SUSTAIN (Sustainable tailored integrated care for older people in Europe) project. This European project aims to compare, assess and implement strategies to improve integrated care experiences aimed at non-institutionalized elderly individuals, in other words, those living in their own homes. The project has an additional goal, which is to seek to ensure that the best integrated care initiatives in this area are applicable and adaptable to other European health systems and regions. The project involves seven European countries working simultaneously on the basis of the definition and implementation of a set of indicators pending definition, tailored to this type of population and integrative approach.

Indicators, therefore, are useful tools for assessing an area as large and as complex as chronicity and they can be applied from a broader or narrower perspective, in other words, taking into account not only the different levels of care in the health system, but also including social services. The results obtained from the implementation of these indicators will provide professionals with objective criteria regarding the quality of their interventions, by facilitating the identification of the strengths of chronic care programs, as well as areas with scope for improvement.

Post written by Noemí Robles, Laia Domingo i Mireia Espallargues. Àrea d’Avaluació, AQuAS.

Gender equality in research, we all benefit

3 Nov
esther-vizcaino
Esther Vizcaino

Several month ago, we spoke about the publication of the article A global call for action to include gender in research impact assessment, in which the team of impact of research at AQuAS participated.

Investment in biomedical research has grown exponentially over recent years and consequently, governments, the industry, research centres and citizens expect to see a return on this investment translated into an increase in health benefits. Investing in research inappropriately can lead to economic and health losses. What’s more, this investment can also be wasted if it is not distributed equally in terms of gender.

That women are poorly represented in the field of health research is nothing new. By poorly represented we are referring to them as researchers as well as participants in research studies. Women receive less funding, appear less frequently than men as authors of publications in scientific journals and are awarded fewer scientific prizes. For example, of the 210 Nobel Prizes of physiology and medicine, there are only 12 women (5,7%).

Moreover, there is evidence that the differences in sex (biological) and of gender (sociocultural) are not included in a routine way in the design of research studies. This can mean that women find themselves at a disadvantage with regards to men as beneficiaries of research in terms of the health, economic and social impact associated with research. It has been demonstrated that incorporating the gender perspective stimulates innovation and excellence in research and technology.

Given the global and fragmented nature of research, we are faced with the inescapable need for all administrations, research institutions and assessment agencies to promote scientific policies that maximise the impact of research by means of gender equality.

article-pavel

Taking this necessity into account, researchers from 15 countries from 6 continents have made a “call for action” in the article to include the gender perspective in the assessment of the impact of research done with the aim of maximising its scientific, economic and social impact. Different recommendations are made in the article to all actors involved in research on how to include and reinforce gender analysis within the assessment of the impact of research.

In 2014, the United Nations launched a campaign, HeForShe, to fight against gender bias at a global level. This campaign wants to involve everyone, including men and boys, as defenders and agents of change to obtain gender equality and the rights of women.

Historically, gender equality has perhaps been mainly adopted as a subject of interest by women but including gender equality in all spheres is a subject for all.

Post written by Esther Vizcaino Garcia, AQuAS.