Improving the quality of healthcare in Intensive Care Units. The PADRIS programme in the Tarragona Datathon 2018 (part one)

7 Feb

Last November, the AQuAS played an important role by means of the PADRIS programme in the Critical Care Data analysis Summit and Tarragona Datathon 2018. Talking about it has been in the pipeline since then.

The PADRIS programme contributes to the improvement of people’s health by making anonymised health information available for re-use by researchers in Catalan research centres, in compliance with the current legal framework and established principles.

Is this seen in practice based on a professional’s experience?

Today we interview Maria Bodi (@mariabodi23), doctor of the Intensive Care Medicine service in the Hospital Universitari de Tarragona Joan XXII, expert in clinical management and aspects of quality and safety in healthcare. Like many health professionals, she combines healthcare practice with research.

María Bodí

What is your day to day like?

As head of the Intensive Care Medicine Service at the hospital, in my day to day my basic task focuses on managing the service and organising the care for critical patients by coordinating the work of the professionals involved. More than 150 people work in the service including medical professionals (specialists in intensive medicine, resident intern doctors), nurses, nurse aids, ancillary staff, physiotherapists and secretaries. In addition, it is a service which participates and collaborates in the teaching of medical, nursing and physiotherapy degrees or certifications.

I try to facilitate the participation of professionals in the strategy of the service. This requires articulating and coordinating all efforts made with a clear objective in mind, which is providing quality care to our patients. To a greater or lesser degree, it is necessary to encourage and coordinate the participation of professionals in care-giving, management, teaching and research. This will guarantee the commitment of a worker in the service’s strategy and its organisation.

If we focus on medical professionals, each member of the team is in charge of a specific area of our speciality and we therefore provide ongoing training for the entire team, assess results and commit ourselves to carrying out actions which derive from the analysis of our results.

What do you think about the format that was used for the Datathon?

The Datathon was the result of a series of developments over recent years within the field of secondary use of data in patients’ clinical records for management and for research at a top level. The experience was very good. Pure science, with doctors, technicians and technology all at the service of real-life data analysis in order to find the best scientific evidence.

In the last three years, our group has delved deeper into the study of data and also into the assessment of the quality and safety of data for secondary use. Our progress has allowed us to collaborate with other leading teams such as the team of Dr Leo Celi of the Massachusetts Institute of Technology with whom we organised this event.

In your opinion, how can the quality of care be improved in intensive care units?

We have to aim for excellence. We need to tackle all the dimensions regarding quality of care. We need to improve effectiveness, safety and efficiency. But when talking about good and efficient results, we are not referring to the number of actions done at a particular cost. We are talking about bringing value to the patient, to the work team, the organisation, the health system and society. How is this achieved?

Our team has worked on developing a methodology which enables us to have automatic indicators of quality. This has been possible because all of a patient’s bedside devices (mechanical ventilation, monitoring, dialysis machines, etc.… ) are connected to the system of clinical information and this information, from the hospital’s clinical records, from laboratories and imaging tests, is integrated. This information is incorporated by professionals in an ordered manner.

By means of these indicators designed with innovative technology, it is possible to assess the processes of care and their results. If the professional participates in the design of a process of care, in its planning, and knows how things are being done and what results there are, they get involved and commit themselves to the aims of the service and the organisation.

Likewise, one needs to move from a reactive to predictive medicine, preventive and personalised. We have data with which to start working along these lines. Nevertheless, the scale and complexity of this data makes it difficult for methods of artificial intelligence to easily translate it into relevant clinical models. The application of cutting-edge predictive methods and data manipulation require collaborative skills between professionals who are medical and technology experts, as well as new models in the treatment and analysis of data.

We have read that it is possible to assess risk in an intensive care unit in real time. It seems difficult to imagine this. What can you tell us about it?

It can indeed. We work on the assumption that we have access to the data stored from all patients that have been admitted to an ICU, or in more than one ICU. If the combination of a group of variables (demographic, clinical, laboratory results) leads to a complication or an adverse event, a trained computer model using this data can predict the risk of the same complication or event occurring if it detects the combination of this group of variables. This is the basis of predictive medicine.

Understood, but in practical terms, what is purpose of assessing the possibility of a risk?

It can range anywhere from analysing a risk or predicting the appearance of a complication in the course of a disease, a problem of safety, an adverse event, the need for or an increase in dosage of a specific drug, to a specific therapy. It can predict the probability of an improvement or worsening and even the risk of death for a patient as a result of their disease.

Medicine already has calculators to assess a risk of death due to a disease based on data bases created by professionals using manual registers. But these days, with the automation of data registration- an example of this being the Clinical Information Systems in our ICUs – today’s methodology based on big data and artificial intelligence allows us to have much more detail when assessing risks.

When there is talk of moving towards a health model based on value, what does this mean exactly?

It is about organising work around the specific conditions of a patient which optimises their cure. It is a question of paying organisations and hospitals for the value they bring. Their results and their costs are the key components of the value which a health system and its professionals offer patients. But if we are talking about results, we are not only interested in whether a patient survives the ICU or not. Results are measured in terms of quality, their capacity of going back to their normal lives, their jobs, etc…

Therefore, to push efforts for improvement, we need to base ourselves on multidisciplinary work and a health model based on value; this means changing an organisation’s business model and investing in systems of measurement, analysis of clinical results and costs.

What importance do you attribute to the fact that data is obtained automatically and not manually?

It means data can be analysed using one source only, errors are minimised and a professional’s time is not required for the task of inputting the data.

How is the data included automatically?

In the ICU, clinical information systems now enable all information to be integrated. Apart from the data which professionals input in an ordered manner during the process of care of a critical patient, laboratory results, imaging tests, clinical records and the data from all a patient’s bedside devices are integrated too (mechanical ventilation, monitoring, dialysis machines, etc…).

What does “secondary use of data” mean?

Primary use is that which is used on a day to day basis, at the patient’s bedside, to take decisions relating to diagnosis, treatment and the planning of the process of care. For example, a decision is made whether to increase the dosage of a drug based on laboratory results.

We talk about secondary use when we refer to using data for management or for research. Obviously, the end aim is still the improvement of care for a patient.

 (To be continued …)

Sleep apnea: towards precision medicine

18 Jan
Ferran Barbé

Obstructive sleep apnea is a chronic disorder characterised by recurrent episodes of a blockage of the upper airways during sleep which affects between 5% and 14% of adults from 30 to 70 years of age, mainly men. In addition, sleep apnea leads to a reduction of the intake of oxygen (hypoxia) during sleep. In order to counteract this lack of oxygen, the brain reacts by forcing a short awakening known as arousal which reactivates the muscles in the upper airway and allows air to pass through (reoxygenation).

These cycles of hypoxia-reoxygenation produce stress to the circulatory system and leads to an increase in the risk of cardiovascular, hypertensive, metabolic, cerebrovascular, or neoplastic diseases, and lastly, a risk of death. At the same time, the arousals prevent a person from having a good night’s rest, produce the feeling of tiredness and an excessive desire to sleep during the day, which is associated with an increase in road accident rates and a decrease in life quality.

A standardised approach in the treatment of sleep apnoea exists: the use of continuous positive airway pressure (CPAP) during the night in order to keep the upper airways open which helps the person rest.

However, treatment with CPAP shows contradictory results. On the one hand, it has been demonstrated that the use of a CPAP for at least 4h per night increases quality of life and reduces blood pressure among population groups with high blood pressure. In contrast, it has not been demonstrated that the use of CPAP reduces the risk of major cardiovascular events or deaths. Therefore, sleep apnea is a heterogeneous disorder and the use of CPAP is not equally effective with all patients. Which patients can benefit most from the treatment? Should all patients be treated in the same way?

We believe it is important to look for patients with sleep apnea profiles that can benefit from a treatment with CPAP. The creation of the PADRIS programme (Public Data Analysis for Health Research and Innovation Programme in Catalonia), whose aim it is to make related health data available to the scientific community to drive research, innovation and assessment in health, has given us the opportunity to be able to analyse all subjects with sleep apnea treated with CPAP in Catalonia. We are talking about 71,217 people, approximately 1% of the general population who were attended by the public health system in Catalonia (primary care, hospital care, social health and/or pharmacy) in the period 2012-2013.

To establish these profiles (that is, groups of patients having similarities with each other but at the same time very different from the remainder) the most frequent comorbidities of patients with sleep apnea have been taken into consideration as well as the clinically relevant comorbidities. Six different profiles of patients were identified among patients with sleep apnea and treated with CPAP in Catalonia.

 

Despite defining these six different patient profiles, we can safely say that the population of Catalonia receiving CPAP is divided into two large basic groups: on the one hand, old age patients, with a high mortality rate and a frequent use of resources, and on the other, patients with fewer comorbidities, a low mortality rate and an infrequent use of resources. You can read it in an article in Plos ONE.

Do both groups need to be treated in the same way? It seems not. In the group with fewer comorbidities, a low mortality rate and an infrequent use of resources, it seems that sleep apnea is the most important determinant in the prognosis of these patients and there is evidence that this would be the group that could most benefit from treatment with CPAP. In contrast, it seems that in the other group sleep apnoea is at a secondary level, given that the predominant diseases are more serious.

The study has allowed us to assess the association between treatment with CPAP and mortality; that is, whether more people die who are being treated with CPAP or whether more people die having the same comorbidities but without sleep apnea.

To be able to achieve this objective, for each patient treated with CPAP we looked for three people with similar characteristics but without sleep apnea. What we observed was surprising, namely that despite presenting a greater number of comorbidities, treatment with CPAP is associated with a decrease in mortality rate at a population level (Am J Crit Care Med 2018).

We now need to continue working to find out what occurs in each of the patient profiles. Having access to this volume of data helps us to make an estimate of the groups of patients with sleep apnoea that will benefit more with CPAP treatment and this means that we are getting closer and closer to precision medicine.

Diseases do not exist, ill people do

Post written by Ferran Barbé, Hospital Institut de Recerca Biomèdica de Lleida.

Reusing health data: oral anticoagulants and cerebral haemorrhages

23 Nov
Rosa Maria Vivanco

Last September, the 35th scientific meeting of the Spanish Epidemiological Society (SEE in Spanish) took place in Barcelona.

The AQuAS presented the impromtu roundtable “The reuse of health data for research: how, when and what is expected from the PADRIS programme in Catalonia.”

At this roundtable, moderated by Mireia Espallargues and Ramon Roman, the attendees were informed of what the PADRIS programme consists of (Public Data Analysis for Health Research and Innovation Programme in Catalonia) and some results were presented, such as those that derive from the study we are carrying out at the IMIM (Medical Research Institute of the Hospital del Mar), with the support  of the Catalan Stroke Program, on the link between the use of oral anticoagulants and cerebral haemorrhages.

Cerebral haemorrhages are the second most frequent type of stroke in the world, with an incidence of 48 cases per 100,000 inhabitants per year (Global Burden Disease 2010). The most frequent cause is high blood pressure.

As with other causes, it points to the use of anticoagulant drugs and old age. High blood pressure is a risk factor which is being detected the earliest and which is being controlled more efficiently in recent years in high income countries, and thus it is estimated that associated cases of cerebral haemorrhages will decrease.

By contrast, it is foreseeable that due to the ageing of the population and the increase in the prescription of anticoagulants to prevent stroke at a primary and secondary stage, cerebral haemorrhages associated to these other risk factors will increase.

On the other hand, new oral anticoagulants have appeared on the market (known as direct action) which, according to clinical trials, offer similar efficacy and improved safety features over the anticoagulants that there have been till now, known as vitamin K dependent.

These results, however, need to be verified in habitual clinical practice.

This is the context in which it is so necessary to have a programme available with the characteristics of the PADRIS programme.

What can we get out of it?

To know, by using population data, among other elements, the incidence of cerebral haemorrhages over the last 10 years, their association with the use of these drugs, both dependent vitamin K coagulants and the new oral anticoagulants, whether the tendency of the prescription has changed, whether the new oral anticoagulants are associated to a lower risk of cerebral haemorrhages as studies seem to indicate, what segment of the population is most affected and even to be able to make estimates for the years ahead.

In the case of our study, the preliminary results that we presented show a tendency for a greater prescription of new oral anticoagulants and a stabilisation of the number of cerebral haemorrhages in recent years. To be able to give more definitive results, more analyses need to be done and we continue working because this is what the complexity of managing data requires.

Making the most of our experience, we feel we are in a position to offer a series of advice to any research group that is considering putting in a request to the PADRIS programme for health data.

One must bear in mind the characteristics of the registries and the data bases from which health information is obtained: namely, that the data obtained is administrative data, with the limitations that this entails, and that technical personnel do not speak the same language as research personnel.

This is why we consider it necessary to have the figure of an interlocutor or mediator that enables the research group and technical and administrative personnel “to understand each other” and that via the feedback from both sides, the group can benefit from the numerous opportunities that the PADRIS programme offers.

In our case, thanks to the Catalan Stroke Program, we were able to push ahead with the project and we hope to be able to publish our results soon and provide society with the corresponding benefits.

Post written by Rosa Maria Vivanco, researcher at the Neurovascular Diseases Research Group of  at IMIM.

Analysis of research data in health: opportunities within reach

9 Feb
Xavier Serra-Picamal
Xavier Serra-Picamal

The generation and storage of data is omnipresent nowadays. The costs have fallen drastically and the health sector is not alien to this. To illustrate this, it is worth having a look at the following graph created by the National Institutes of Health about the human genome, which shows the evolution of the cost of sequencing a genome:Cost per genome

As can be seen, since 2007, the cost of sequencing a genome has fallen dramatically. Having one’s own genome sequenced is now possible and in the future it may become commonplace. Bearing in mind that a copy of the human genome is made up of aproximately 3 million base pairs (3 million adeninines, thymines, citosines or guanines arranged sequentially in 23 chromosomes ) it is easy to infer that, also within this field, the quantity of data generated in the coming years will be massive.

This tendency is repeated in other areas of health care: among other, clinical history data in electronic format, medical imaging, primary care data or that of drug consumption are obtained and stored in registries, in general, structured and interlinked. The potential of this data for carrying out research in order to provide better health care is notable, in the way of faster and more accurate diagnoses, improved therapeutic approaches and a better management of the system.

To analyse the challenges and opportunities at a European level, a work session organised by the Directorate-General for Research and Innovation of the European Commission was held in Luxembourg with representatives from AQuAS. The points discussed have been gathered in the article Making sense of big data in health research: Towards an EU action plan, published in the Genome Medicine magazine and of open access. As explained in the article, using this information to provide better healthcare is a challenge but a great opportunity at the same time.

Making sense of big data in health research

Nevertheless, a big effort is required to transform this data into knowledge and specific actions. However much the costs of generating and storing data may drop, the management of information, its interpretation, and the generation of knowledge needs considerable investment and resources. This means having adequate information systems as well as the economic and human resources so that the data can be treated efficiently and the protection of individual rights guaranteed. In addition, the participation, commitment and effective communication of all the agents of the system is needed (including the scientific community, patients, citizens, the administration, and so on) to guarantee that this data is used efficiently, responsibly and that it promotes research which is efficient and of quality.

Catalonia, because of the size of its population, the fact that it has an integrated health system and the work done over many years, is well positioned to be able promote the reuse of health data for research. At an international level, some comparable projects exist and new projects exist with the goal of integrating and consolidating data from different sources, with some very ambitious and attractive programmes. The  PADRIS Programme, presented last 12 January, aims to centralise and make the data generated in health available to researchers in research centres in Catalonia and universities so as to provide better healthcare with a maximum guarantee in security and privacy. The work to be done is considerable. The resources needed too. The opportunities to provide better research and better healthcare are within reach.

Post written by Xavier Serra-Picamal, researcher at the Karolinska Institutet (Sweden).

* TERMCAT (the centre for terminology in the Catalan language) has recently dealt with the question of how to say data scientist in Catalan. The subject is very much a current issue!