How to foster an integrated health and social care centred on the individual in a local environment

14 Mar

SUSTAIN is a Horizon2020 European Project related to integrated care for older people that live at home with complex health and social needs. Thirteen initiatives from seven European projects participate in it.

It is a project whose aim is to improve a range of things including the care centred on the individual, the coordination of teams of professionals, the preventive nature of care, safety and efficiency.

In Catalonia, two initiatives (Social and Health Integration of Sabadell Nord and the Programme for complex chronic and advanced patients and the geriatric population of Osona) have participated in the design and development of projects for improvement which have been assessed by AQuAS (you can read the report and article here).

On 23rd January, 2019, professionals involved in the groups that are the driving force of the two local initiatives (Sabadell and Osona) of integrated health and social care – family doctors, workers and social workers, nurses, geriatric and management personnel- met at AQuAS in their first joint meeting.

(SUSTAIN team Sabadell, Osona and AQuAS in Barcelona

The professionals were able to share thoughts on one question: What remains of the SUSTAIN project in the territory?

This was the starting point to identify specific actions that can make the projects sustainable and to also comment on aspects for improvement beyond the projects.

The aim was to identify opportunities within reach of the local initiatives themselves that could serve to generate a more favourable environment for integrated health and social care centred on the individual, both preventive and reactive in nature.

From the brainstorming that was done, a multitude of local actions can be derived with which to drive integrated health and social care centred on the individual. Let’s look at it in detail:

  1. Prioritise at a population level Delimiting a population group for which it is deemed most important to apply the new PIAI method (Individualised Plan for Integrated Care), so that efforts can be concentrated on this group until the context allows for scaling up to the entire population of 65 and older. One possibility would be the older people who live at home with complex health and social needs who at present receive home-based healthcare, or for those cases known by primary healthcare but are not beneficiaries of home-based social care. This would be done in order to eliminate the barrier limiting access to social services or because there is a lack of awareness of these social service
  2. Provide continuity in coordination between sectors, while taking into consideration the suitability of the new PIAI method for each individual case Continuing with periodic meetings of the team of professionals in charge of the multidimensional assessment of needs so as to plan an individualised and integrated health and social care (at least of the triad of primary care, family medicine-nursing-social work). These meetings, held on a monthly basis, would enable the teams to consider who, among those users visited recently (in primary care centres, at home, at local social services, at intermediary care in the case of Osona), would particularly benefit from the integrated and participative approach of SUSTAIN, with the possible introduction of changes or objectives to improve their care and their quality of life.
  3. Inviting professionals that have not participated in SUSTAIN to use the new PIAI method, giving these professionals the necessary tools (time, training) so they can familiarise themselves with the approach of integrated health and social care centred on the individual. With this in mind, there is talk of the importance of “maintaining the spirit of SUSTAIN” and in gradually getting the most reluctant professionals more involved in introducing changes to their way of working.
  4. Carrying out an analysis of the different capacities and responsibilities of each professional in primary care teams (family medicine-nursing-social work-social health work), and sharing out roles and responsibilities ad hoc, which can enhance the skills of each individual. This could mean that professionals who officially occupy the same position (for example, family medicine) would become specialised in one or another type of care (emergency, development of the PIAI, specific pathologies), and it would mean accepting that not all professionals with the same position need do the same: “one-size-only professionals are not needed”.
  5. Enhancing the figure of the spokesperson in a healthcare team, both when dealing with a user as well as an internal coordinator of a team, emphasising that the user has a team with professionals that interact with each other in order to provide solutions to their different needs as quickly as possible. The emphasis is on the opportunity that workers and social workers have in acting as liaison officers between primary care, local social services and community resources while at the same time coordinating actions which are contained in the PIAI.
  6. Analysing how the figure of the social and health worker can best fit in In the case of Sabadell, this figure has only been incorporated very recently. An analysis will need to be carried out with the entire group of professionals that intervene in care but especially with the social workers (under contract with local social services, socio-health workers or social workers specialised in intermediary care). This will be done in order to understand their capacities and perspectives of what function each professional should have bearing in mind their particularities and the specific environments in which they work (for example, specific tools and procedures they can apply, what information systems they have at their disposal or what other professionals they are in direct contact with).
  7. Set up safe and respectful local systems with the LOPD (Spanish personal data protection law) in order to exchange the minimal information necessary to carry out a joint multidimensional assessment and to share the PAIAs among the most important professionals in each case. The example of Integrated System of Health in Osona (SISO) is mentioned, which enables primary care professionals to see which users are admitted in the hospital centres that make up the system, or the mechanism foreseen by the County Council of Osona to enable social health workers employed in health centres to consult the degree of dependency of a user.

We end this post by commenting that this week we participated in the final conference of the project in Brussels.

Representatives of the Osona SUSTAIN team, Sabadell and AQuAS in Brussels

Post written by Jillian Reynolds, Lina Masana, Nuri Cayuelas and Mireia Espallargues.

Less Google® glass and more gender glasses

8 Mar
Esther Arévalo, Marta Millaret

Last week, Barcelona hosted the Mobile World Congress 2019. From AQuAS, we attended the Health and Wellness Summit which takes place within the framework of 4YFN. Very relevant subjects were dealt with regarding technology and digital health putting the spotlight on artificial intelligence, data analytics, aspects of safety, user experience and health systems.

Apart from what was presented, we were able to read about different experiences and news regarding the lack of women among the speakers.

For this reason, today, 8 March, International Women’s Day, we interview Rossana Alessandrello, electronics engineer specialised in bioengineering who works in a world of technology and health, two environments with their own characteristics. Dolores Ruiz Muñoz, epidemiologist and public health technician specialised in gender subjects, conducted the interview.

What are the people you work with like? What responsibilities do women have and what roles do they tend to play in your sector?

Men. I work in a world of men and I would say that there are differences with the roles of women in the ICT. While men are more daring and reckless, women are not. Women provide the element of feasibility and bring ideas down to earth. My feeling is that without women, men would not accomplish anything. We bring everything down to earth in every way. We make work plans operational, from a management, legal and social perspective.

What have your men or women bosses been like?

Men. And I see it as my own limitation. I do not take enough risks. I make things possible but I am not sufficiently audacious. That is my reality, my framework. I provide the creative part but “taking the plunge” is what I lack. I have worked with American, Swedish and Catalan bosses, both in private and public companies. It would not seem to be a coincidence. I am not saying that there are no women technological entrepreneurs, there are some. In my opinion, they have attained leadership positions because they have been able to take advantage of “the plunge” that men take and so jump themselves.

How do you see the future?

I see the future positively. For me, the collaboration between men and women is a very positive collaboration, and it is a necessary synergy. It is just a matter of accepting differences and taking them into account. I consider myself to be an enterprising person. I have built up my professional career which has ranged from offering specific products to managing teams. I have chosen and managed my own career and made my decisions.

In the context of innovation, do you have the perception that there are gender biases? For example, in subjects where innovation is prioritised, the way innovation is done or in any other aspect?

There are no biases. No biases at all. We all want to innovate. Perhaps there is a nuance in the fact that female innovation is always oriented towards improvement and impact. In this respect, I would go so far as to say that there are differences. An example of this would be the case of Bill Gates when he considered creating an operative system without being very sure at the time of the implications it would have in the long run. In my opinion, women on the other hand, work with a creativity that always includes a reason, an end aim or an objective. It is not a paradigm of innovating for innovating’s sake. The other paradigm would be “a challenge as a challenge”.

If we ask the general public whether they can mention the name of a woman known for her contributions to the ICT world, they would probably have considerable difficulty. It is probably because of this that there are international awards and initiatives exclusively for women and that their equivalent does not exist for men. For example, I am thinking about the EU Prize for Women Innovators 2018, Women IT Awards, International Girls in IT Day and Women in Health IT Community.

Most of the projects of public procurement of innovation in which we are working on from the AQuAS were begun by men. We should ask ourselves whether it is because women are not in the appropriate positions or whether it is for other reasons. Similarly, the majority of SMEs that tender for these projects are led by men.

What do you think about quota policies?

I think other things need to be done. There is a real need to train, to educate, to prepare ourselves in equality in the defence of ideas and to encourage this aspect from the time we are very young girls. School has a role in all this and it needs to go a step further and the communications media too.

I have often been “the woman” in meetings and I have been treated differently because of this. Things are constantly happening to me which I do not think would happen to men. Recently, in a meeting I was given a kiss on the forehead as a show of “thanks” for an idea. Further back, in another meeting, I remember that I was pregnant and that they introduced me with the phrase “This pregnant lady, please be kind to her”. I am sure they are experiences which arise from a “naturalness of affection” that I have normalised, as a woman, to be able to move forward professionally. I have many anecdotes like these. I would say that in some sectors, such as in mine which combines ICT and health, things are very much like this at the moment.

Would you like to mention anything that I haven’t asked you about?

Yes. I have had the experience of not having being able to opt for a position of responsibility because of being on maternity leave. It was an American company, at a time of change and fusions. At that time, I experienced firsthand that in the “male world” not being permanently available was not acceptable. I hope things have changed.

Thank you very much, Rossana and Lola!

It has been a year since we published a text by Iria Caamiña from this space about needing to put on our gender glasses. Are we still in the same position?

From AQuAS, we strongly support the incorporation of gender perspective in our day to day and in our work lines. Gender perspective? Yes, absolutely. And also new technologies, research, assessment, data analytics and innovation.

We would like to end this text with this video from EIT Health about women and innovation in health.

 

Integrated care in Europe: Change management? The ACT@Scale experience

28 Feb
Núria Rodríguez-Valiente

The ACT@Scale project responds to the need for a deeper look into the results and conclusions that came out of the previous project, Advancing Care Coordination and Telehealth Deployment (2013-2015) and it follows the strategic lines proposed by the European Association on Active and Healthy Ageing (EIP on AHA).

This new project, ACT@Scale, began in March 2016 within the framework of the Horizon 2020 programme which was financed by the European Union. The aim is on transforming health processes and the provision of services related to integrated care and telemonitoring.

How have we done all this?

Different regions in Europe, the industry and innovative academic institutions have worked in collaboration over these past few years. The Agency for Health Quality and Assessment of Catalonia (AQuAS) has been one of the partners in this consortium leading the work-package Change Management, Stakeholder Management and Staff Engagement.

With 15 partners, in association, from 8 countries of the European Union and with the coordination of Phillips Healthcare we have worked collaboratively in order to consolidate and scale up the best practices identified in integrated care and telemonitoring so that they can be transferred to other European regions.

The Basque Country, The Netherlands, Scotland, Germany and Catalonia have contributed with a total of 15 programmes of integrated care, both innovative and of reference, regarding best practices in health. In particular, Catalonia has participated with five reference programmes of good practices in integrated care: Programme of Chronic Care, of the Badalona Serveis Assistencials; Nursing Homes, of MUTUAM; Frail Care for Older People, of the Parc Sanitari Pere Virgili; Complex Case Management, of the Hospital Clínic de Barcelona and the Promotion of Physical Activity, also of the Hospital Clínic de Barcelona.

ACT@Scale has developed a framework of assessment based on experience, practice and evidence using the Donabedian theoretical framework. To assess the implementation of the programmes, a collaborative methodology (Plan-Do-Study-Act) has been used. Thus, in order to assess processes of implementation and scalability, research has been done within four work packages:

  1. Service Selection, led by Kronikgune
  2. Business Models, led by the University of Groningen
  3. Citizen Empowerment, led by NIRE
  4. Change and Stakeholder Management, led by AQuAS

What have we learnt in relation to Change Management, Stakeholder and Staff Engagement?

  • In relation to Stakeholder Management, the leaders of the programmes that completed the questionnaires agreed that participative and co-creation strategies need to be  introduced to improve the quality of integrated care and to reduce the resistance of stakeholders to change, where all identified stakeholders feel part of the process.
  • In terms of Change Management, regarding leadership, new communication strategies need to be incorporated which should be based on a collaborative methodology so as to detect and prioritise needs, implement them and monitor and assess them within the processes of change initiated.
  • In terms of Staff Engagement, we can confirm that the implementation of programmes of integrated care is a dynamic process in which potential risks need to be identified and therefore, assessment and redesign need to be ongoing..

Integrated care contributes to the creation of new health scenarios, some in a state of change and others as yet unknown. These new scenarios should make us think about defining new professional profiles, new areas of expertise and identify new actors and “actresses”.

Consortium ACT@Scale Project

Post written by Núria Rodríguez-Valiente.

Involving patients in decisions about their care

22 Feb

 
Angela Coulter
Angela Coulter

The Catalan Health Department deserves many congratulations on the launch of the website Shared decisions to help patients make decisions about their care. Nowadays the internet makes it possible to find vast quantities of information about health and healthcare, but this can be confusing and some of it is misleading and unreliable. So it is especially important to ensure that people are given access to trustworthy information to help them make decisions about their health.

We all want healthcare to be responsive to our needs and wishes. We want to be listened to, to be given clear explanations and to have our values and preferences taken seriously. Many of us want to be able to influence any decisions that affect us, including treatment decisions.

The key questions that we want answers to are as follows:

  • What are my options?
  • What are the benefits and possible harms?
  • How likely are these benefits and harms?
  • How can you help me make a decision that’s right for me?

Shared decision making is central to a patient-centred approach. It involves clinicians and patients working together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences.  It requires the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a systematic approach to recording and implementing patients’ preferences.

Shared decision making is recommended in many common situations – for people facing major treatment decisions where there is more than one feasible option, for decisions about screening tests and preventive strategies, for maternity care choices, for choosing care and support packages for long-term conditions, for advance care planning for mental health problems and for end-of-life care.

Provision of reliable, balanced evidence-based information has been shown to improve people’s knowledge and ability to participate in decisions about their care, improving the quality and appropriateness of clinical decision making. And as part of a collaborative approach to care planning for long-term conditions it can lead to improved health outcomes.

Information provision is only the first step. As well as providing facts and figures to help people consider their options, doctors, nurses, and other clinicians must engage patients in a process of deliberation to determine their preferred course of action. This demands good conversations where both parties communicate well and share information. Effective risk communication, preference elicitation and decision support are essential skills for clinicians. And then of course there must be a commitment from both clinician and patient to act on the mutually agreed decisions.

Implementing shared decision making is challenging. It is very different from the traditional approach in which clinicians view themselves as experts and sole decision makers and patients’ knowledge, expertise and preferences are unacknowledged or undervalued.

Patients used to be expected to play a passive role and follow doctors’ orders, but this old-fashioned view is beginning to give way to demands for a more collaborative approach. This is very good news! Patients have grown up and health systems must now adapt to meet their expectations, helping them to become knowledgeable, skilled and confident co-producers of health.

Improving the quality of healthcare in intensive care units. The PADRIS programme in the Tarragona Datathon 2018 (part two)

14 Feb

Today we continue the interview with Maria Bodí (@mariabodi23), doctor at the Intensive Medicine Service, and Josep Gómez (@JosepGomezAlvarez), doctor in Biotechnology at the Hospital Universitari de Tarragona Joan XXII, experts in clinical management and aspects of quality and safety in healthcare.

Josep Gómez, María Bodí

In your opinion, what are the conclusions of the so-called Real World Data studies which were carried out using real data in terms of benefits and risks related to patient safety?

Benefits? Everything. Information derived from a real healthcare environment is necessary to take decisions. Randomised clinical trials which have defined the effectiveness and safety of therapeutic interventions have served till now as a Gold Standard of the best scientific evidence. But they are very costly, and what is more, they are aimed at very selective groups of patients. Studies and analyses derived from the real world, known as Real World Data, mean it is possible to know the effectiveness and safety of interventions in groups of patients which are usually excluded from trials (pregnant women, older people, patients with many comorbidities who are the majority, etc…).

There is a series of limitations and obstacles that prevent Real World Data from substituting clinical trials. On the one hand, legal and ethical aspects and those concerning the guarantee of the quality of data. On the other, it is not possible to accept the bias that there is when not randomising Real World Data. Before taking decisions, we need to ensure that there are no confusing factors.

Real World Data complements the information obtained from clinical trials in routine clinical practice.

Some weeks ago we received the visit of Lucian Leape in Barcelona, author of the extremely famous book “To Err is Human”. We were fortunate to be able to listen to him in a talk at AQuAS – were you able to listen to him?

No, unfortunately we were not able to attend. It is a pity because we were told that it was a good review of what we have learnt in the past two decades in the field of clinical safety and that some good recommendations were made for the future.

In your opinion, what contributions did the To Err is Human report, published 20 years ago, make?

It revolutionised the field of safety. It was a paradigm shift which is still in place today.

The To Err is Human report denounced the thousands of deaths in the United States resulting from adverse events which could have been avoided! People who were dying in hospitals for reasons unrelated to the disease for which they had been admitted. The most important thing is that those events, those deaths, could have been avoided. Better training, better work organisation, knowing and analysing risks and teamwork, among other factors, have been shown to be key elements that contribute to reducing the amount of events and their severity.  

What impact has the PADRIS programme had on your day to day?

In 2016, MIMIC-II was published, a huge set of de-identified data of ICU patients of the Harvard Medical School. It was created and has been maintained by researchers at the Massachusetts Institute of Technology. They published this dataset with the aim of democratising research. The idea is that after attending a training course on the treatment of data for research, you are certified as a practising researcher and you sign a document of usage: ultimately, to enable a researcher to have access to a large data base to carry out research. In addition, it encourages researchers to share the code (data processing methodology) that they have applied to data to obtain the results they publish. Altogether, it makes studies more transparent and repeatable which in turn increases the excellence of scientific production.

As a result of our experience in extracting data from the clinical information system to develop our management tool of the unit, we took on the challenge of generating our own data base to carry out research. Once created, we contacted the PADRIS programme so they could advise us regarding data anonymisation protocols and methodologies to get access to the programme in order to carry out research. They showed great interest in our project at all times and they helped us see it to fruition and thus the role of the PADRIS programme was decisive in making the Datathon Tarragona 2018 possible. We are in fact still in contact with them to define future strategies about how to make this data available for research projects without infringing any data protection law and how to broaden the database with data from other ICUs in the Catalan territory.

If you could make a recommendation to other researchers who wish to do research, what would it be?

We recommend they collaborate with experts in other fields, especially those related to data and statistical technology. We are now reaching a level of sophistication and volume of data that obliges us to work in multidisciplinary teams in order to make the most of data and to understand it the best we can. The datathons are a great example of this; the role of the clinician is decisive in defining aims and in validating the results that appear when cutting edge algorithms are applied by data scientists. At the same time, the role of data scientists is also decisive when suggesting and applying complex methodologies which are far removed from traditional statistics applied within a clinical context.

What professional challenge would you like to succeed with in 2019?

The ultimate professional challenge for 2019 is the same as each year: improving the care given to patients which are admitted to an ICU. To achieve this, we have some very specific challenges in our unit. On the one hand, to continue developing our tool to exploit data which enables us to analyse processes and the results obtained in our day to day and in this way become aware of where we need to place our attention to make improvements. On the other hand, taking advantage of the secondary use of data to carry out research and to generate algorithms for automatic learning which are able to help a doctor take the most accurate and appropriate decisions based on the profile of each disease.

 (You can read the first part of this interview here)

 

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 …)

Regarding the generational changeover

31 Jan

Joan Escarrabill

The day before turning 65 last November, I climbed up the 238 steps of the Pyramid of the Sun in Teotihuacan (near FD Mexico). I did it with only a short break halfway up. At the top I had dyspnoea but I was able to hold a conversation without difficulty. I went down backwards holding onto the guide rope because my left knee didn’t allow me to go down in a conventional way, face forward, but I did get down. Human beings have the tendency of setting temporary goals arbitrarily. Establishing 18 as the legal age has nothing to do with the maturity of a person and nor does being 65 make you old. To understand the idea of “getting old” it might be more objective to remember, for example, “the first time that  …”

  • … a resident doctor or student speaks to you in a formal way.
  • … an unknown person, on the street, identifies you with a “sir”.
  • … a young person offers you their seat on the underground or bus.
  • … you come across a book in a second-hand bookshop and see that you have the same one, bought many years ago (and remember perfectly well where and when you bought it).
  • … you realise you are no longer able to run.
  • … you forget to hail your bus or don’t run down the stairs in an underground station to catch a train.
  • … you look for the banister to descend a staircase.
  • … you receive a letter from the Town Council saying that you are eligible for a “pink pass” (senior citizen’s transport pass)
  • … in a professional meeting you are asked directly how long you have before retirement.
  • … your presentation is appreciated because you know the history of the problem well.
  • … or comments are made saying that your beard puts years on you.

All this does not happen to you at 65. All this occurs little by little, in an irreversible manner. It is biology. And worse for those who don’t get there.

That is why retiring at 65 is no more than an illogical convention bereft of justification. There are people who anxiously wait for retirement to be able to “do the things they like”. I don’t understand this idea of retirement at all. Maybe it’s because I don’t understand retirement with a set date (like an expiry date). Whatever the case, I don’t see the need to retire to do other things because I really like what I do.

A very different thing is to reject retirement and to hold onto the monopoly of space, time and ideas. A generational change over is essential. With time, we all tend towards stability and Darwin showed us that the more stable a system, the less possibility it has for survival. A stable system has little variability and therefore little capacity to respond to new situations. The limited capacity of response impedes adaptation and therefore leads us to the same future as that of the dinosaurs.

It is much more important to talk about a generational changeover than retirement. Some key ideas in my opinion are:

  1. No generation has the right to stipulate how their successors should live. Each generation has the right (and obligation) to live as they see fit.
  2. No generation has the right to leave the space they have occupied in a way that impedes successive generations to design it the way they think best.
  3. No generation has the right to prevent successive generations from moving forward at their own chosen speed. Each one can move forward at the speed they desire but there comes a time when generations that have more past than future cannot monopolise the fast lane on the motorway.
  4. There is no need to consider retirement as a “set date” although it is imperative to be clearly aware that natural evolution will lead us to gradual invisibility.
  5. Experience DOES NOT generate knowledge. Experience is very useful to identify patterns more quickly, to increase the “bank of solutions” or to carry out repetitive tasks with greater precision (although it won’t be long before machines beat us at this). What generates knowledge is curiosity, critical thinking and hard work (very hard work), in other words, perseverance.
  6. Each generation has the duty to explain what they have done and why they did that. They need to put this forward for general consideration. This should not be done to gain recognition but to be questioned so as to help learn from mistakes and to avoid others committing unnecessary reiterations.
  7. Naturally, no generation has the right to define the agenda that a succeeding generation needs to follow. Giving an opinion with a critical spirit, yes, always, but stipulating the itinerary based on experience is doing a great disservice to the generational changeover.

All this is not a justification for paralysis. There are always challenges in this process. It is always possible to find “blue oceans” on which to sail. Joaquim Mª Puyal has returned to the radio. I have not listened to him at all but I have read some declarations in which he stated that “at my age, a challenge is a luxury”. We can (should) look for challenges at any given time, but with the rules of the game in mind.

A friend of mine, Josep Mª Monguet, told me that he went to visit a friend of his who was very ill. He said that the man, now ill, had always been very active. When he saw him, my friend, using a stereotype said to him: “What are you up to these days?” “I think up concepts”, he replied. After all, you are very fortunate if you can still “think up concepts”.

Post written by Joan Escarrabill (@jescarrabill)

Shall we go an extra mile? The IMIM and IDIBELL place the patient at the centre of research

24 Jan

Maite Solans Domènech

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.

Medical tourism

17 Jan

Joan MV Pons

Those who have seen the British movie “The Best Exotic Marigold Hotel” (2012) will remember that one of the protagonists, a cantankerous old lady who saves the hotel thanks to her bookkeeping skills, goes to India to get a quicker treatment for arthroplasty although I can’t remember whether it was for a hip or knee replacement. It serves as another example of what is known as medical tourism which consists of precisely that, travelling to another country to find a health service more quickly or cheaply.

Barcelona is a centre of attraction for health tourism and several clinics and hospitals in the city advertise their services through the Barcelona Medical Center and the Barcelona Medical Agency, in a mix of hotel interests and prestigious professionals. The Catalan Tourism Agency itself includes this as an asset for a country. Not long ago, when there were doubts about whether there would be enough antiviral treatments of direct action to treat all people infected with the hepatitis C virus, some astute countries like Egypt, where tourism had dropped sharply for different reasons that have not gone by unnoticed, announced that for 5,900€-8,000€ you could spend one week in the country, have a stroll around the pyramids and at the same time receive treatment. It is worth mentioning that Egypt, due to its high prevalence of hepatitis C, has great expertise in this and is an undeniable tourist destination, even more so if we throw in a cruise along the Nile to boot.

We are not saying anything new regarding health tourism because even in the times of ancient Greece some temples in Asclepi had more attraction than others. It is a phenomenon which has been on the rise for quite a few years now even though it has been affected by economic recessions, like other businesses. We are talking about a medical tourism which is sensitive to quality and another more sensitive to cost; the first predominant among the affluent and the second among the middle class. No country seems to be protectionist in this field. In fact, quite the contrary and it is a form of importation (people who come looking for a health service with a short stay but which can easily be extended in the long term to pensioners that come looking for sea and sun in the last years of their lives). It could almost be considered as a form of foreign investment.

There are countries which, following Adam Smith’s recommendations, have specialised in a particular type of health tourism. Barcelona is well-known for its eye clinics, digestive surgery, transplants and assisted reproduction. In terms of transplantation, everyone knows that the trade in human organs is banned but no one doubts that in some countries it is done. Regarding assisted reproduction, the greater or lesser attraction of a country is largely determined by the degree of permissiveness in its legislation and as with other types of health tourism, by its costs. This legal issue becomes particularly apparent in what is known as surrogate pregnancy or surrogacy. It is said that this “industry” specifically, where a difference can be made between gestational surrogacy (embryos generated in vitro) and traditional methods (only artificial insemination), generates up to 6 billion dollars annually and that India is one of the main destinations. Needless to say, there are considerable ethical issues regarding both assisted reproduction and transplantation.

Besides what has already been mentioned, one can find a wide range of services abroad: all sorts of heart, bariatric or plastic surgeries, and also the more traditional treatments in health spas in exclusive locations (who does not think of “The Magic Mountain” by Thomas Mann). For those who see the world as a potential source of business, medical tourism can be a great investment and if tendencies today are anything to go by, it will continue grow even more in the future. It is also a very competitive field of business, especially in terms of prices as an international comparison of costs show.

Post written by Joan MV Pons.