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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Saturday, August 1, 2015

Patients and their role in patient organisations

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!