Personalized medicine

//Interview with doctor Joan Escarrabill, responsable of the Chronic Patient Care Programme at Hospital Clínic de Barcelona

Joan Escarrabill holds a doctorate in Medicine (UB), a bachelor’s degree in Medicine and Surgery (UAB) and a master’s degree in Health Service Administration (UAB). He is currently in charge of the Chronic Patient Care Programme at Hospital Clínic de Barcelona and the Master Plan for Diseases of the Respiratory System of the Regional Government of Catalonia’s Department of Health. He has also run the Assessment Division of the Agency for Health Quality and Assessment of Catalonia (AIAQS) and the Innovation Department of the Institute for Health Studies (IES). His educational, well-considered discourse reveals that he has thought seriously about the likely future of public health. From his job position, his is taking the necessary steps to prepare for this future. He is a member of the European Respiratory Society (ERS), the Catalan Pneumology Society (SOCAP) and the Spanish Society of Pneumology and Thoracic Surgery (SEPAR).

The number of patients with chronic diseases is increasing as the population grows. Do we need to change the healthcare model to improve the way we tackle chronicity?

The aim is for people to remain independent for as long as possible, with the ability to manage their own lives and their own health. Due to population ageing and chronic diseases, which are linked in some ways, the health system faces the challenge of encouraging proactivity. Currently, the system works well reactively: when someone is ill, they are treated and cared for. However, we need to be able to identify which patients need assistance and to provide this before they come to us, because this is the best way to solve problems. Many people consider that we should stratify the population, that we should determine the needs of the different groups, and implement preventive activities throughout life. This is already occurring, with strategies for promoting healthy habits such as diet and exercise.

What would be the ideal healthcare model? Will medicine be person-centred in the future?

«The health system must respond to two kinds of needs: public and individual. These are not conflicting, but they need to be combined»

A current dilemma is how to make personalized medicine compatible with care for the population. The health system must respond to two kinds of needs: public and individual. These are not conflicting, but they need to be combined. From the perspective of public health, if we focus on the population’s state of health, the specific needs of individuals may be lost. From a strictly healthcare perspective, the risk is to become overly concerned with the patient in front of us, and to lose sight of improvements in care for the population. This is one discussion that we should bring to the table.

Personalized medicine would be a step in the right direction, in the sense that it would aim to be predictive, preventive and participative. However, some problems arise when it is implemented in population groups. What solution is being evaluated at the moment? Until we can attain this customized care for individuals, the health system will have to identify groups of patients with similar needs. We are already working on these kinds of initiatives.

What do we understand by “common needs”?

One example is patients with newly diagnosed diabetes. These people need specific medical intervention, so we have established a care programme that includes education on treatment, monitoring, etc. Another group of patients with common needs are those we have discharged from hospital. For a month or a month and a half, these people are more fragile and susceptible. As a result, they have common needs, such as that of patients who require oxygen in their homes. This would be one approach to starting to work on the personalization of medicine.

If we considered all the respiratory diseases together, the group would be too large because the needs of a patient with a minor respiratory problem who has not been admitted to hospital are not the same as those of a patient with advanced disease. Notice that we associate ageing with chronic disease because they coexist and, in some way, they are both part of the same package. As it is difficult to age without any disease or chronic disorders, what we must do is minimize the impact and maintain the patient’s independence.

How can we improve coordination between levels of healthcare: primary care and hospital care on the one hand, and the various specialists on the other?

«The hospital of the future must be one that is totally open to the community»

Here thereare two views: one that we could call analogical, the other digital. The digital view involves communication and information sharing. Certainly, the best way to improve relations between levels of healthcare is by associating with each other and having resources that facilitate interactions. However, my impression is that we need to go a little further than this, that the hospital of the future must be one that is totally open to the community. In other words, one set of tasks must be carried out at a health centre: surgical interventions, intensive care, examinations, care for fragile patients who need comprehensive care, etc. But a range of care services can be transferred to the community. If you can blur the boundary between hospital and community, the relationship will be very different because you will already be there.

19159207_xxlOne aspect that will be very important in this respect will be the patient’s home: not so much from the perspective of comfort, though this is also a factor, but in terms of a person’s safety and not wasting time and space. This will be another element that will promote continuity of care. What should be done and how? We will see: it will depend greatly on the situation in each territory.

A third element of change is the ideal of 7/24/365. It will be very difficult for a hospital to only function from Monday to Friday and in school hours. There must be an internal change in organization so that some procedures can be carried out seven days a week. I don’t mean the entire hospital or all professionals; but there must be a profound change in all of the health system: in primary care, hospitals and specialities.

Should specializations and professional roles also be adapted to the new reality?

Currently there are around fourteen or fifteen health professions. However, doctors, nurses, pharmacists and physiotherapists make up the biggest group. I think the role of professionals will change dramatically. Nursing will play a much more important role than it does at the moment: doctors will focus on identifying a problem and on accurate diagnosis, but long-term patient follow-up will definitely be undertaken by other professionals. The prominence of biologists will also increase when we begin to make biological diagnoses. What’s more, technology will affect all of these professional roles. At the moment, what we are using are really a lot of gadgets: a webcam is practical, but it doesn’t cure anyone. However, when we begin to introduce sensors, nanotechnology, wearables… they could change the situation dramatically, because these devices provide information. It’s what we know as big data.

I imagine that patient empowerment is essential to this process. What tools can people be given so that they take on this responsibility?

From a liberal perspective, we have to let people take on this responsibility if they want to. We can’t just approach people and say “look, read this and decide”. First, we have to draw up strategies to provide information to patients. However, the information should be transparent, easy to understand and accessible, otherwise we can overwhelm people with data they don’t understand. Second, we must have structural programmes in place for education on treatment. As professionals, we must give patients the resources they need to manage their disease. This must be done systematically, not erratically according to each person’s commitment.

Finally, we have to find tools to support decision-making. Above all, we have to give patients the time and ability to discuss the information provided with their doctors. A key factor is to understand patients’ experiences. We shouldn’t ask whether they are satisfied or not: most patients are happy with their care. If you only assess satisfaction, the results tend to be positive for procedures ranging from an uncomplicated childbirth to a heart operation. So satisfaction tends to be very high for relatively straightforward and more sophisticated interventions. The problem is that we don’t learn anything from this.

«We don’t ask what a patient wants, we ask him to explain how we have looked after him»

Therefore, the key question we should ask ourselves is whether we can improve. To find out, we have already begun to work with some patient groups. On the basis of Clayton Christensen’s idea in Jobs to be done, the argument we use is: “you don’t know what you want, but you know what you don’t like”. So we don’t ask what a patient wants, we ask him to explain how we have looked after him. We identify the key points in the healthcare process. If a man with a heart problem has been to hospital, then he must have seen doctors, had some previous examinations, been diagnosed, been admitted to hospital, been prepared for surgery, had the operation, then the postoperative care and, finally, been discharged and sent home. This would be the overall pattern. So we ask the patient about his experience in each of the stages. This is the methodological approach that we adopt to find out about a patient’s experience. We have used this method with patients who have oxygen at home and patients who have sleep disorders, and we will apply it to patients who are admitted to hospital and diabetics who have insulin pumps. In short, with information, education on treatment, and assessment of patients’ experiences we can provide people with the tools they need to make decisions.

If we sum up all the changes you mention (organizational, methodological, professional, technological and educational), the result is a considerable transformation in healthcare in the future. What is your forecast?

Theoretically, this will be what happens. How will it end? I don’t know; it’s hard to make predictions. I don’t think this change will occur in thirty years, I think it’ll happen much sooner. According to Darwinists, evolution is not progressive and slow, instead there is a punctuated equilibrium: things change very gradually, but suddenly there is rapid acceleration in a short period of time, followed by a stage that is more or less stable. My forecast is that we are changing, but a perfect storm will arise and an explosion will occur. Because when technology is combined with budget cuts and social pressure, there must be major reform. The time when there was money to invest is over, and it’s very unlikely to be experienced again. So we have to recoup funds without damaging the system. What is clear is that it’s very difficult to continue to work for long in the way we are working now.


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