#efpPCCT: Yes to patient-centric clinical trials!

Hey! Hold on a second… Weren´t clinical trials already patient-centric? I assumed that they were… Well, I guess that is the first thing I learnt in this wonderful event organized by EyeForPharma and that took place in London at the beginning of June.


Clinical Trials are not patient centric… yet

Shame… Shame on you pharma! 😉 (joking) (kinda, hehe).

Now talking seriously, a clinical trial is an event where doctors, nurses and patients team up to get the approval of a new treatment.

At least, that’s what I thought and still think, of course! Without us patients new treatments would be impossible to have.

However, it seems pharma doesn’t see us as important (at the moment) and is starting to realize just now the potential we have when it comes to designing clinical trials and participating FOR REAL in the whole process.


Some pharmas are really working on it!

Those are the good news and another of the things I learnt in the event. Best of all, as I already said in the event #e4pbarca, they all are gathering to share knowledge and the wonderful experience and advantages of letting patients participate in the processes.

I had the great pleasure to listen to Anne Beal again. So enthusiastic about it!


What is patient centric about?

Anne Beal, from Sanofi, said it very clear:

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Considering the patient, empowering and understanding them.

I would go further from that, if I may…

Taking the patient into consideration is not making decisions for them based in what doctors think we would say or need. If you want to make decisions based in patient consideration ask the patient 😉 .

It is very difficult to walk in a patient’s shoe and sometimes health professionals think patients would prefer one thing when they’d actually rather the complete opposite.

Nothing to blame for, of course! It is just that we may think more about QoL and you, as physicians, think more about effectiveness and our test results. However, maybe I am much happier living with some pain instead of going through the side effects of some medication.


An example: the thank you letter

It really shocked me to hear absolutely all speakers talking about how important it is to send a thank you letter to a patient after completing the trial. They said that was putting the patient in the center and that everyone should do it.

Never crossed my mind…

It would be a nice thing to receive, yeh, but… I’d rather have another things instead: my data, the results of the trial…

I think they could use that money for much better things like, for example, empowering patients or making a good awareness campaign so that society knew about the illness I am living with 🙂 . I would be happy to participate! Now that rocks!


A questionnaire

A questionnaire is always a good idea and that came up several times as well. One of the examples was this slide from Stephanie Manson (Novartis), who gave a great lesson on this matter.

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Now I say yes to the thank you 🙂 : because it comes with the opportunity to give my feedback. Only, please don’t forget to include some free-text boxes in case you have missed to ask me about something that was important for me 😉 .


Is pharma listening to the right people patients?

A very interested and important question indeed! So important to patients like me that we talked about this at #Doctors20 as well.

Is the person pharma is learning from a patient? Or just a representative?

Is pharma listening to an empowered patient, or doesn’t it matter how much that patient knows about his/her illness and what a clinical trial is?

The fact is that the answers we get could be very different depending of the person we ask to…

Sad but true, I have heard patient representatives and associations talk about my illness and what were supposed to be my needs and it all be complete rubbish. Sadder but even more true, some people don’t represent the patients’ needs but their own and that is something we should take into account.

And, as Anne Beal very well stated, there are different kind of patients and we should include those who can help the most regardless of their affiliation to an specific group.

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You can read my presentation at #Doctors20 2015 in which I tried to draw attention to the need patients have to be reached out by pharma regardless their condition. We all have many common needs and the resources spent in certain apps, games or platforms for one specific illness could be used by a whole community of patients with different conditions.

I also went through the important issue as whether or not pharma is approaching the right people… Or patients.


The Pillars of Patient Centricity

This I love and I would put it up in every hospital 😀 (great Anne Beal again!)

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About this I will only say (again): sometimes the patient’s needs are a bit different from what doctors think… When you have to get a balance in life you not only weigh how effective a treatment is but also how much of a hustle is to follow the treatment or how it impacts your QoL.

My main problem, for instance, is the extreme fatigue, so very little will help if my treatment consists in taking a pill every 8 hours… I already suffer from insomnia due to another treatment and yet another problem I have is the ‘painsomnia’ (when pain doesn’t let you sleep). Add to that the fact that I am like a baby: need to go to bed at 9pm sharp. Not because I am a bit of a sleep-maniac but because my body does not work anymore at that time… It takes me some time to get a good rest…

So pleeeeease don’t make me wake up to take a pill at 4am…


Why be afraid of the patient input?

I don’t know if I am right to think this, but it is what I see. Maybe pharma and other health specialists think that patients will want to take over their role somehow or will get quite picky when evaluating a certain treatment or giving an input.

However, if you are talking to the right patient, you will get a patient’s answer.

I know my role as a patient. I am no doctor nor I would ever pretend to be one. If someone asked for my input on a treatment I would judge it as a patient:

  • Does it make adherence easy?
  • Is it easy for any patient to differentiate the pill from another ones they are taking?
  • Is it easy for patients to handle it? Can they easily take the pill out, open the package or apply it?

Sometimes very little things make a huge difference and Thorsten Thormann, from LEO Pharma, gave some good examples of original products and the modifications made after the patient input. A tiny change in the product format can make it possible for a patient to actually be able to follow the treatment. It’s a win-win situation!


The role of the family

Family has a lot to say when it comes to talking about patients. They may be ‘only’ caregivers or they can also be patients themselves.

The one thing I missed the most in the event was that no-one seem to see how important family is… Also when it comes to clinical trials. Maybe that thank you note should be sent to them because they don’t sign any informed consent but they participate in the trial every single day along with the patient.

Thank the Lord, Andrew Esther Schorr gave a great speech on this. I also contributed with my own experience, that I will tell you another day 😉 .


To be continued…

There was so much that got me jumping in joy!!! I was seriously excited about some of the things I learnt and I want to tell you all about it. Give me some time and I will!!! 🙂


Related articles:

– Can pharma and patients talk to each other? It’s a must!

– Some videos from EyeForPharma (Barcelone- March 2015):


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2 pensamientos sobre “#efpPCCT: Yes to patient-centric clinical trials!

  1. lucero says:

    Hola nuria soy lucero mi hija le diagnosticaron hace 3 semanas artritis intiferenciadaed y lupus like estoy muy confundida yo tengo artritis. Reumatoide y fibromialgia y se los sintomas pero cuando me dijieron lupus en mi hija de 15 años es dificil aceptarlo y ella esta en su etapa de negacion total q hago ojala me puedas dar tus comentarios. Somos de mexico

    • Nuria says:

      Hola Lucero, y mil perdones por tardar en responderte… No soy madre, pero he visto a mi mare pasarlo mal cuando me diagnosticaron a mí, a la edad de tu hija más o menos.

      EL proceso de adaptación y aceptación del diagnóstico es completamente diferente en ti y en tu hija. Cada una debéis respetar el proceso de la otra, aunque como madre es inevitable que quieras ayudar a tu hija, protegerla y asegurarte de que cumple con la medicación y los consejos del médico. Tenéis un papel complicado, lo sé…

      No habré tenido yo discusiones y enfados con mi madre!!! Y ella lo único que hacía era decirme que me echara la crema de protección solar, me preguntaba si me hacía falta que me comprara más medicación… Pero yo, a mis 14 años, no quería escuchar nada sobre lupus… Quería vivir mis 14 años como mis amigas y pensaba erróneamente que si hacía como si el lupus no existiera… pues no existiría.

      Pero el tiempo me enseñó que eso es una tontería. Tu hija debe darse cuenta de lo mismo y aceptar su diagnóstico, adaptarse… Ya sabes.

      Espero que este artículo te ayude algo: «Mi hijo tiene una enfermedad crónica«.

      Anímala a ir a la asociación, leer este blog si a ti te ayuda y crees que puede ayudarle a ella… Y, sobre todo, aunque sé que debe ser el peor de los castigos para una madre, déjala un poquito a su aire hasta que ella misma vaya adaptándose. Mientras se cuide y sea responsable con su lupus… Eso es lo importante.

      Un abrazo enorme y siento no poder ser de más ayuda…