About me

I'm Alfonso Aguarón and I welcome you to my blog. Inspired by my own diagnosis of a Hodgkin's Lymphoma in 2008 I decided to get involved in patient advocacy.
A few years later, I keep commited to my desire of help and support patients. There's still a lot to do so, do we look for change in healthcare together? Let's go!

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Tuesday, July 1, 2014

Patient information: It is a must

A couple of weeks ago a friend of mine decided to buy a new TV to replace his old tube to watch the World Cup in high definition. After the Spanish team went home before than expected it was probably not a good decision, but that’s another story. So he asked me to go with him to a mall to see some models.

Once there, my friend asked the sales assistant for a 32” TV. What happened next can be sum up as a bunch of features and specs of each of the single TV on that shop: 4K, HD, OLED, contrast ratio, refresh rate, screen resolution, smart TV, brands… a whole universe of information for… well, a TV. After 20 minutes, my friend decided to pick up one of those TVs and then went to a pharmacy to buy an aspirin for his headache.

This situation made me think about how information is unbalanced depending on the kind of issue you want to handle. And let’s talk about health. One of the most common feelings of any of us when we are diagnosed is the lack of information: we usually know nothing or just a little about the disease, we are shocked and we don’t have all the time we would like at the medical consultation to ask about our doubts, fears and concerns. All this uncertainty could result into a lack of treatment adherence, a mistrust in our HCPs, a wide variety of social and emotional issues and, in the end, a loss of quality of life.

As a consequence of the research and new agents introduced during the last two decades, the number of patients diagnosed a major chronic disease such as diabetes, cardiovascular diseases, cancer, COPD or neurodegenerative diseases is growing increasingly. According to the numbers of the World Health Organisation (WHO), the proportion of deaths caused by chronic diseases goes between 51% in low income countries to 87% in high income countries.

In this scenario information is not the only but one of the most important keys. And it should be a must. An informed and empowered patient is able to establish a better relationship with the healthcare team, to better adhere to treatment, to develop better self-care strategies and, in the end, to live better. If someone can have a complete information when choosing a television, shouldn’t a patient have right to access the information related with its own health?


  1. Very pertinent issue . One of the basic rights of a patient is the right to information. Unfortunately in many parts of the world , patients are not even aware they have rights .

    1. 100% agree Viji. Information is sometimes not perceived as a right but as a privilege. And this is where patient advocates come in.