Active patient on line networks – managing health instead of disease : the case of the Basque Country

Our current healthcare and hospital systems were created, infections and acute diseases were the main causes of sickness and death. Thanks to the medical advances that took place during the 20th Century, our life expectancy has become larger, precisely because infectious and acute diseases have been so well controlled. And just because of that, nowadays. The diseases causing most hospital visits are chronic diseases. Now that we are fortunately enough far beyond the life expectancy late of 50 to 60 years that was typical during the mid of the 20th Century in Europe (see link), chronic diseases are our unavoidable companions up from a certain age for all of us.

Life expectancy evolution in Europe has lead to more chronic diseases
Life expectancy evolution in Europe has lead to more chronic diseases

Prevention and patient empowerment
Many of the chronicity effects can be tempered with prevention; unfortunately the Spanish healthcare system, invests only 1,4% of its budget into prevention (a number almost close to zero in the private healthcare sector). Another way to reduce chronicity spending is empowering of patients and relatives.

In this sense, a paradigmatic case in Spain is the Kronikoen Sarea network in the Basque Country in 2012 with the help of the Basque Innovation Agency Innobasque. Kronikoen Sarea (chronic patient network in Basque language) was born out of the need to support the 8.500 patients that every year become chronically sick in the Basque Country. The exact number is not really known, but it is estimated to be around 30% of population. The number is to grow, since the Basque Country shows highest ageing rates in Spain. Currently the Basque Healthcare System Osakidetza accounts 60% of treatments owing to chronic patients and informs that they need 70% to 80% of its resources.

Evolution of chronicity
Evolution of chronicity

The need to empower chronic patients has a clear cost rationale, but socially it is a burden when a person has to make 15 visits ore more to a healthcare center. By burden we do not mean just an inconvenience. Frequent hospital mean a trouble in workplace and working day organization, difficulties within family relationships and can be also an important cost if the patient needs to go from a small and distant place to a big hospital in a city.

On the other hand, 95% of a chronic patient’s life takes place outside of the healthcare center. The Kronikoen Sarea network is designed in order that these patients manage their health –not their disease- during that 95% of time they are not in the healthcare system.

A balance of Kronikoen Sarea
In order to make a balance of these two years of experience with on line patient empowerment we spoke with Roberto Nuño, R&D director of the Basque Institute for Healthcare Innovation (BIOEF).

Roberto Nuño, director of O +berri, Bioef
Roberto Nuño, director of O +berri, Bioef

How was the Kronikoen Sarea program born?
Kronikoen Sarea is an emotion social network that is designed for chronic patients and their caregivers. It is one of the projects born out of the Basque Chronicity Strategy set up by the Basque Government in 2010. It was designed and implemented in a collaborative way by several organization, lead by Innobasque.

The main goal is patient empowerment, what are its advantages?
During the evaluations done by us on the program we have seen that the most important item for users is the relational capital that is created: “give support and feel supported” as well as “listen and be listened” are the most frequent items mentioned by users … it is difficult to measure the actual impact of participating in this network on health and wellbeing, but we think that it contributed to make users become active (we prefer the concept of activating rather than the one of empowerment). Besides, there is robust evidence that active patients have better health results and consume less healthcare resources. (See for instance this article).

Does not patient activation harm trust in physicians?
We would have to talk about different professional profiles: from those old fashioned and paternalistic (“the first think I tell the patients is not to look into Google”), to those that believe in new ways of relationships with patients; face to face and on line as a kind of relationship that is more productive because goals and decisions are shared and the patients becomes co-responsible for his/her health. Profiles that make an intelligent use of information technologies. Depending on these profiles, in some cases some distrust may appear, but in many other cases, relationships become richer. A significant fact is that 83% of users has not informed his/her physician about participation at Kronikoen Sarea; this could mean a certain fear to annoy the physician.

Did patients participate in the program design? How?
Innobasque created an important collaborative network with patients and associations with the goal to build a “house” were everybody felt comfortable, despite the big differences between a young person with diabetes type 1, a lady with fibromyalgia or old people under effects of ageing. Yet all of them share the desire to feel better and to share their emotions and experiences.

What were the main difficulties of the program and what are you not so happy about?
Koronikoen Sarea has fulfilled the goals it was created for and has an important amount of loyal users. It must be admitted that the expectation about the user number were higher and also we expected them to be more participative. But like in every social network, there is a passive group. Another key aspect is the role of facilitators: it is difficult to know which is the right “dose”. On one hand, Kronikoen Sarea must have its own life, but on the other hand it is important to create contents of interest and conversation flows. We have still to learn about these issues. You can find more information in this link.

Kronikoen Sarea website
Kronikoen Sarea website

In patient panels much stress has been put on co-creation. Could you give us some examples?
We have always seen Kronikoen Sarea as a social innovation in itself, but also as an element of participation and potentially of co-creation through co-creation. By now small initiatives have emerged: face to face group meetings, training sessions, etc. were we have seen an enormous potential. In order to take advantage of it we need resources we currently do not have.

Thank you for this conversation


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