Summer time has come and I thought that it was a great opportunity to resume the normal activity of the blog. A few days ago I read a post in Celia Marin’s blog talking about an interesting topic which can be summed up in the new challenges of the professionalisation of patient organisations and how this can distance them from real patients.

Let’s start by saying that patient organisations (associations, networks, foundations, etc.) are quite different one from each other depending on their objectives, scope and organizational structure. You can find, for instance, from small volunteer-based support groups to big professionalised organisations; from local associations providing patient support to supranational foundations lobbying for treatment access; from Boards constituted by patients to HCP drive entities. Also you might find a wide variety of profiles in their driving-forces: patients, relatives, physicians and professionals of all areas, who can develop their work in a volunteer, part-time or full time paid basis.

Keeping in mind all these peculiarities of the advocacy community, let’s focus on the key issue: should it be mandatory to have patients involved in the driving-force of a patient organization? Even this is a hard question to answer with a yes or no, from my humble opinion, I would say no. Let’s go deeper into details.

Before I get started, don’t get me wrong: I think that patients and their inner circle can play an important role in patient organisations, basically because they are the ones experiencing the disease in their own flesh and this will certainly lead them to take some action in order to improve their lives and try to meet their uncovered needs. However, it is common to listen “only a patient can understand what another patient is going through”. Of course, there are many common feelings from patients suffering the same disease, but every journey is unique and, even it can be quite supportive for certain individuals, it shouldn’t be taken as the Holy Grail or we will fail into the error of proselytizing the role of the patient in the advocacy community.

A part from that, regardless of our organisation focus, there is always something to measure the actions of our organisations: the outcomes for patients. No matter if we’re focusing on providing psychological support in a one-on-one basis, developing educational tools about self-care, lobbying for better treatment access, funding clinical research or advocate for policy changes. At the end of the day what really matters is that patients are doing better than yesterday until we reach the point in which we won’t be longer needed, staying away from anecdotal or non-relevant results.  And for that, being a patient is not a must. What it is a must is commitment, liability, seriousness and hard work of every single person with an active role in our organisation, no matter whether they are volunteers, paid staff or trustees, no matter whether they are patients or not.

I know this is a controversial topic which has been raised in some forums in recent times and here it is my point of view. I would like to know yours. What do you think about it? I’m looking forward for your comments!

We talk about invisible illnesses to refer to those diseases in which symptoms might not be apparent to other people's eyes. These diseases are usually chronic and have a variable impact in the quality of life of patients. It is complicated to strictly categorise all of them, but they include diseases such as diabetes, arthritis or heart diseases, to name just a few. According to some studies^[1], approximately 96% of people who live with a chronic illness may look perfectly healthy but might suffer from symptoms such as fatigue, pain, dizziness or cognitive impairment. Many patient organisations around the world work hard to raise awareness with the goal of throwing light on this reality.

Most of these diseases are well known by the scientific community and there are lots of experts and many ongoing clinical trials aiming to get either a cure, either a proper management of the symptoms. Even a society used to ask for healthy and productive individuals knows, to some extent, about them and is usually aware of the constraints that patients may experience. But, what happens when some of this diseases are not only invisible to the eyes of society but also to the vast majority of the healthcare professionals and the pharmaceutical industry even when scientific evidence has already proved their existence?

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.