The video will be subtitled in Spanish and English in the upcoming days. In the meantime, you can watch the full video here!



You can find more information about the initiative here:

• "Patient Advocates In. Not Out" website
• Facebook photo album

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• Capacity building. It connects the passion (WHY) with the talent (HOW). Delegating tasks and, in some occasions, responsibilities in talented people can really make the difference. As I mentioned before, a good leader goal should be to create a team of talented people and to manage to convey them the passion.
• Networking. It connects the talent (HOW) with the work (WHAT). A mentor and good friend of mine told me once "Bring together goodwill talented people in the same place and you'll get results". That is networking. In this particular case, one plus one is more than two.
• Excellence. It connects the passion (WHY) with the work (WHAT). You should be able to see, touch and perceive the results. And that takes a lot of work. Inspiring this work from the passion is crucial for succeeding. This way the people won't work in your organisation just because they don't have anything better to do (if they are volunteers) or for the paycheck (if they are employees), but because they really want to be part of the organisation. This way the results will be outstanding.

First of all, I'd like to apologize I didn't write any entry for a long while. My mother has been sick and we have spent most of the time between the hospital and the doctor's practice. Fortunately, everything has come back to normality. In a sense, this post is inspired in everything that happened in the last few weeks. It's a topic I had in mind to talk about but, due to the circumstances, I'll do it before I thought.

I state my position clearly: I think there's a great gap that is not being covered in medical faculties that train our future doctors. Every single student will have to pass subjects such as anatomy, physiology, inmunology, pathology... Then everyone of them will have to choose their specialty so they will develope a in-depth knowledge on the heart, the endocrine system or the blood and the circulatory system. When they become interins in a hospital, they'll learn how to perform a precise diagnosis, how to handle symptoms and how to prescribe medications to cure the disease. Maybe, when they're ready to start working in a hospital, that young man who decided to become a doctor by vocation, may forget that a human being is in front of him while he's so busy dealing with a disease instead of a person. Is it his fault? Well, social and interpersonal skills are not required to go to University. But, what I'm almost 100% sure, is that nobody tought him how to comunicate with a patient, how to comunicate bad news or just how to stare at the eyes of a patient when he goes into the practice, leave the computer apart for a while and ask him: "How do you do?".

Last year, I had the inmense forturne to facilitate a seminar on paliative care in oncology on the occasion of the 8th Spanish Congress for Cancer Patients. Dr. Álvaro Gándara, president of SECPAL (Spanish Society of Paliative Care) was very clear: "Medical faculties are training healers, not carers". All the speakers, who were members of the Paliative Care Unit of the Fundación Instituto San José de Madrid, agreed that even the long-term outcome of the disease may be death, the doctor will consider this as a failure, because the treatment did not cure the patient. Alfredo Dominguez, nurse, summed it up well: "When a doctor says there's nothing left to do for a patient, everything still remains to be done". Also Maribel Carreras, psychologist, and María del Puerto Gómez, social worker, laid down the keys to make the change happen when treating a patient. They reinforced for me all the ideas that I had, not only as advocate, but as a patient and caregiver of a patient with a serious disease.

I've remembered a conversation that has taught me much as patient advocate. During lunch time, I was talking with my great friend and professional Fátima Castaño, psycho-oncologist, whom I was lucky to work side by side during 2 wonderful years. I was kidding about a movie in which a recent graduate psychologist extended her hand over the patient's arm to comfort him (in a very clumsy way, I have to say). I asked her: "Why psychologists use that compulsive habit of touching patients and relatives?". She explained me that in some cases this gesture can comfort the person and convey trust and complicity. So then the patient feels relaxed and shows his fears and concerns and doesn't keep them for himself. I have to say that I've remember this conversation every single day during the last weeks while I was accompanying my mother to the doctor, taking care of her at home, watching how she was nervous during various diagnosis tests and when I was waiting in the hall while she was in the operating room. And I have to say I was lucky to have that compassionate hand next to me. Sadly it never was a doctor's hand. Not because doctors were more or less sympathetic. Maybe, it was only because nobody taught them.

However, to be fair, I've the feeling that things are going to change. I am lucky to know medicine students who are members of the CEEM (Spanish Council of Medicine Students) and some others who organises the COE (Oncology Congress for Medicine Students). They are our future doctors. And they worry about patients. They want us to talk to them, to explain them our experience and concerns. When we talk to them, they express a critical point of view. This shows to me that they are treating us like equals and that they really want to confront the patients' speech with the healthcare professionals. On this relationship will depend that their training will change to be really focused on the patient and not only on the disease. There's still a long way to walk, but the seeds of change are already planted. Now it's time to watering them.

I’ve met many patients who have been proposed to enroll in a clinical trial and some of them first reaction was: “I’m not a rat lab!”. While it is true this fact might be influenced by the fact that clinical trials are usually referred in Spain as “experimental treatments” and that most of the patients agree to be part of a clinical trial (mainly because in some cases the doctor told them to do it), what is true is that there’s still a information gap that should be filled.

At this point I’d like to make the difference when talking about patient involvement in clinical trials:

• The patient as a “passive” subject, that is, the patient is going to participate in the trial after receiving certain type of information in order to receive a treatment which is intended to be potentially beneficial for treating his or her disease.

• The patient as an active agent in the clinical trial development, who’s able to provide its own value to the whole process, not only by being the subject of investigation.

When talking about the patient as a “passive” subject, we have to refer to the informed consent. Let’s have a look at informed consent definition: "In a clinical trial, an ongoing (in contrast to the “one-off” informed consents of non-trial-related clinical practice) interactive process that provides a trial participant (subject) with explanations to help him or her make educated decisions about whether to begin or continue participating in a trial." (Segen's Medical Dictionary. 2012 Farlex, Inc.). Many pilot studies have been conducted to know about the patients’ perception of the adequacy of the informed consent (if you’re interested in accessing them just type “perception of informed consent” in Google and you’ll get hundreds of abstracts). Although results might vary, a representative percentage of patients still considers the informed consent more like a disclaimer than a patient's right itself. Also the recruitment process may drive doctors to try to find patients meeting the criteria that might benefit from the trial while they forget about the patient’s needs, concerns and other emotional and social issues. Informed consent has to represent a process in which all actors involved have to establish an honest, deep, committed and clear dialogue about the clinical trial and its implications so the patient can really have a clear overview of the whole process in order to make a well considered decision. An, at this point, I think including in the process an independent expert patient, previously trained, with proper skill and who has already participated in a trial could really help a lot and act as a link between the healthcare team and the patient and relatives.

But, how could patients could participate in a more active way into the clinical trial development? Here comes where I think patient advocates should work hard in the upcoming years. First of all, let’s talk about real facts:

1. Most clinical trials are developed and funded by the pharmaceutical industry.
2. Patients are not included in the development process.
3. Patient-reported outcomes have had so far a low specific weight in research.

I’ve to say that most of my activity in advocacy has been developed in oncology so this perception might differ from other disease (for example, I know in some rare diseases patients become more involved into the whole process when orphan drugs are being studied). Anyway,my opinion is that involving patients in the trial development process through powerful and well-trained patient organisations is the key. I don’t like repeating myself, but as I said in my previous post about HTA, I have the feeling that sometimes patients are not yet considered an actual stakeholder.

Getting patients involved in the development process is a real challenge that requires the effort of all agents:

• First of all, the pharmaceutical industry. One of the reasons I’ve heard from industry representatives about the difficulties of getting patients involved into a clinical trial development process is related to trade secret. Well, there should be a way to get rid of this problem, and above all, it has to be a real commitment to find it. I can understand most trials are promoted and funded by private companies that compete with each other, but health is much more than just a business. And above all, getting patients involved in the development process is more and an advantage than a pain in the ass. After all, if you’re thinking just about business, which company is not interested in what their customers demand? (Author’s Note: I don’t like talking about customers when referring to patients, but here it’s a perfect interplay).

• Decision-making bodies. Both national and international regulations should be focused in providing patients a greater presence in R&D. Also promoting rules and laws to grant more transparency and quality of the ongoing studies is a must. If patients are going to be involved they should be able to access information about research so they can provide their unique view. A good example could be the European Medicines Agency decision to oblige the sponsors to publish summary results in the European Clinical Trials Database.

• Finally, patients’ representatives. So if us, patients, want to be involved in all this whole process we need to show from the outset that we are prepared to face the challenge. And it’s a big one. Understanding research phases and scientific methods might be a overwhelming task, so a proper training is required to introduce the demands of the patients in good time and in an appropriate manner. Traditionally, clinical endpoints like PFS (Progression Free Survival), RD (Response Duration) OS (Overall Survival) have served to produce new drugs and treatments that have mainly improved the survival of patients: we live longer . Now patients have to introduce topics such as quality of life and patient reported outcomes to improve our lives: we live better.

I know I say this many times but it’s the time for patients. And it is our responsibility to become part of the speech. So let’s go for it.

If you reach this article you might be thinking about finding an absolute answer about the goodness or badness of HTA. I must warn you that you won’t find it. Not everything is black or white in HTA, but a grayscale. However, my personal opinion is that there’s a gap to make it look whiter.

But first of all I’d like to share the best definition of HTA I’ve found so far: “HTA is not simply a set of disciplines and methods to assess technologies. It represents instead a real philosophy of management for a healthcare system that intends to tie the decisions systematically taken to the available scientific evidence or, otherwise, to ‘transparent’ mechanisms in which all stakeholders can participate by bringing their own perspective” (Cicchetti, Marchetti, 2010).

I must say that, at least in a theoretical sense, I agree with the existence of HTA, understanding those as a way to connect science and innovation with social and economical environments and, finally, as a way to improve the decision-making processes. Coming back to the definition above, let’s define the main stakeholders: industry, payers, providers (HCPs and hospitals) and citizens. And when talking about citizens I’d like to pay special attention to patients, as well as caregivers. A survey conducted by the INAHTA titled “Involvement of consumers in the HTA activities of INAHTA members” shows that, even when consumers (I hate this word when talking about patients, I must say) have been increasingly involved in most of the HTA agencies in the last few years, there’s still a considerable gap in the attention paid to them. Also the dialogue with patients seems not to be generally established in a regular basis.

Source: QALIBRA

Keeping this in mind, conversation might turn evil if we talk about QALYs (Quality-adjusted life year), a measure that takes into account both the quantity and quality of life generated by healthcare interventions, which is defined as the arithmetic product of life expectancy and a measure of the quality of the remaining life-years. Numbers are cold, but they get even colder when quality of life indicators are drawn from the observation of patients. Well, patient reported outcomes are good, but not enough from my opinion. The overwhelming sense I get is that patients are not really considered as actual stakeholders, but only mere interlocutors in non-issues.

My perception is that there are two main problems are out there:

• There’s still a considerable information gap between professional and non-professional citizens. Information is the most important issue when taking part into this dialogue, specially when we have very tight deadlines in the decision-making processes. This leads in not considering patient organisations as an actual partner.
• Transparency is not as good as it should. Receiving feedback from submissions is tricky, as well as understanding the criteria of patient inclusion in the processes. Transparency must be also set up in the relationship between the industry and patient organisations. Industry has to respect the autonomy of the patients as an independent stakeholder.

Patients have to be aware of their potential role in providing the humanistic approach, as well as patient-evidence submissions, to the HTA decision-making. Also all agents should be included to empower the role of patients. But it is not all bad news. Some European HTA agencies as SMC serving Scotland, NICE serving England and Wales, as well as EUnetHTA, with an European approach, are supporting training activities for patient organisations. Also the AEMPS from Spain started involving patient organisations in the ITP processes (ITP stands for Reports of Therapeutics Positioning).

So my conclusion is that HTAs are needed, they are not good or evil by themselves, but they could be really improved with a greater participation of patients. After all, if there were no patients, what would be the reason for having HTA?

If you ask people about what their hobbies are you’ll probably get 9 out of 10 saying: “Travelling, reading and watching movies”. Even though I’ve always thought saying this is the same as saying nothing, what is clear is that most of us like movies. So, let’s go to the cinema!

Health have been a recurring topic since the early days of cinema. So today I want to share with you probably my top 10 films related with health in one way or another. But I’m sure you have your own list, so just leave a comment below!

So here we go!
50/50

Watch the trailer

The Doctor

Watch the trailerWit

Watch the trailer

Patch Adams


Watch the trailer

Mr Rice's secret

Watch the trailer

Philadelphia

Watch the trailer

Awakenings

Watch the trailer

My life without me

Watch the trailer

The Big 'C'

Watch the trailer

The spirit of '45

Watch the trailer

I'm glad to present the first "I Advocate" interview. Today's guest is Diego Villalón, social worker, patient advocate and Spanish blogger. I hope you all like it.

The video has been subtitled in both English and Spanish. You can select your preferred language with the "Subtitles" icon in the player bar. If you're interested in having the subtitles in your language, just leave a comment or send me a message.


Related links:

• Click here to visit "Recursos para im-pacientes"

I have always loved games. Well, who doesn’t? Since I was a child I liked playing all kind of games. I used to played Cluedo, Risk, Scrabble and Mastermind with my friends and my family. Also I was crazy about video games. My parents gave away my brother Álvaro a Sinclair ZX Spectrum 48k in 1986 and I sneaked into his room to play when he was not using it. My friends and I played for hours during our childhood and adolescence… and well, also a little when we become adults. My mother used to quarrel me. “You spent so many hours playing”. And probably she was right. After all, I was playing games for fun and I wasted my time instead of making more “productive things”. But, what if gaming could be used to make “productive things”?

Commonly, a game has always been perceived as a way to produce amusement. But, if we look beyond that truism, a game can be defined as a set of challenges that we have to overcome to achieve some goals. And, what the heck games have to do with health? Well, in fact it does.

When a patient is diagnosed a disease faces many challenges: to deal with the symptoms, to cope with treatment side effects, to understand treatments, to improve the quality of life, and I could go on. To process all this information might be overwhelming for some patients or difficult to understand. Getting the proper information is a key to handle better your own disease. However, some patients could feel strained and then simply gave up and put all those issues in the hands of others.

At this point, games can be, and in fact they are, a good tool to reach those patients. Ben Sawyer, co-founder of Games for Health Project, says that games “allow you to add specific tracks of content alongside some of our traditional talks on health behavior change, disease management, epidemiology or HCPs training”. That’s it! We have a great opportunity to cover all kind of topic of a wide range of diseases. And thanks to the “democratisation” of games (specially the electronic ones), we can reach all age ranges. This is not child’s play anymore!

I have added some links to videos below illustrating a wide range of possibilities.

• Video game to detect cognitive differences in Alzheimer's
• Genes in space: a video game to help beat cancer sooner
• Escape from Diab: A video game to show kids healthy habbits to avoid and control diabetes
• Diplopia: A Virtual Reality Game to Help People With Amblyopia
• Red Hill Studios: Developing games to help Parkinson’s patients to cope with their symptoms 

These are some examples of games, but I’m pretty sure you might know more. So please, feel free to share them at the comments. Finally I recommend you to have a look at the Games for Health Europe conference to be held in the 27th & 28th of October in Utrecht. It could be a great opportunity to know the last updates. Until then, I want to have a quick game so… Ready to play?

The growing importance of patients as stakeholders also requires to be more prepared to face the challenges out there, even further in a global economical crisis environment in which payers are playing an important role, innovative treatments are becoming more expensive and patients have new needs as their diseases become chronic and they live longer.

Today it’s the day to start putting into practice concepts like collaboration, networking and preparation. We have a great opportunity and, at the same time, a great challenge. Are we ready? I hope so, because our time is now.

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?

Welcome to my blog! I hope this to be the first post of many to be written.

So, why do I decide to start a blog? I've had the idea of writting in a blog since a long time ago but time was a valuable good that I have lacked. Also I didn't feel like I had many things to say. Now these two issues are completely solved.

And so, why "I advocate"? Since I was diagnosed a Hodgkin's Lymphoma in 2008 I got involved in patient advocacy, first as a volunteer and later as a professional. During these few years I developed a passion for helping and supporting other people going through a serious disease. And if you add this to all the advocates I have known all around the world, from whom I learned so much not only about healthcare but also about the importance of connecting others and sharing resources, my only feeling was: "Now it's the time".

So I invite you to stay connected to this space, to comment and share your thoughts and to keep on looking for change in healthcare.
Ready? Let's go!