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!
Friday, October 24, 2014
It's been a while since my last post. I've recently started working so 24 hours are not being enough for all the things I have in mind! However, I have endeavoured to write at least twice a month (I'll manage to find the time to do it).
A few weeks ago I was invited to participate in a workshop for patient advocates from all over the world of inmune and inflamatory diseases. I was asked to talk about ideas to propel an organization to excellence and best meet the needs of patients. Such a challenge, quite overwhelming. We had the chance to have a very interesting and enriching discussion. For this reason I've decided to share my humble opinion with you and to know what you think about it.
During all these 6 years involved in patient advocacy, I have had the immense luck of knowing patients and groups all over the world, operating locally, nationally and internationally. Something that really caught my attention is that some organisations seem to succeed reaching their goals and to engage with patients while others get stuck in the way, languishing or disappearing altogether. Since April I have had a lot of time to reflect on advocacy, and one of the main matters that has been back of my mind ever since is: what makes the difference between a succeeding organisation from a failing one?
A couple of months ago I found by chance a talk from Simon Senek titled "How great leaders inspire action?" (http://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action).
Simon talk about a concept that he called "The Golden Circle" (well, yes, he's a marketing guy... and you know they have to put a cool name to every single thing). This idea really summarized quite well my thought about succeeding patient groups.
The concept is very simple and it's about how the different organisations act. In the outermost circle we have the "What" question. Focusing on patient organisations, I assume the 100% of people leading these groups will answer basically the same if they are asked about "What they do": to develop projects, to offer services, to organise activities and/or to make lobby. So the difference between succeeding and failing is not in what we do by itself.
If we go more into the inner circle we have the "How" question. "How a group does what it does" may vary a lot depending on many factors: volunteer-based vs professionalised organisations, funding, scope, disease awareness and I could go on. But my experience has taught me that this does not make the difference either. I know many small groups which seem to reach their goals and best meet the need of patients, while others with more resources and bigger projects simply don't. So then, what?
In my opinion, the key difference is in the "Why" question. Why do we do what we do? Why do we exist as patient groups? Why do we wake up every single day to give our best in a harshly world as is patient advocacy? I think the answer for succeeding can only be one: PASSION.
Passion has to be the engine and fuel of every single person involved in patient advocacy with a certain role of leadership in one way or another. That's the main key to make an organisation succeed without being affected by the daily issues.
Of course, it is not only about being passionate. I've mentioned the "How" before and this is related with TALENT. Our organisations need people with talent in different areas. And also talent has to be actively promoted. A good patient group leader does not need to be the best in every single field, but to make others better.
Lastly, the answer to the "What" question is WORK. Hard work indeed. There are a lot of challenges out there for a patient group and the difference between success and fail also lies in working hard to achieve them.
Passion, talent and work must be promoted and coordinated from a leadership position. There are three key concepts repeated ad nauseam in a whole variety of forums and meeting, but only those who really put them into practice are able to achieve success:
- 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.
Lastly I'd like to add that I think our final goal as patient advocates is to no longer be necessary. That would mean that we'd have achieved all of our objectives. So it is crucial that we spare no effort in making this a success.
This post has been longer than usual, but I wanted to share with you all this concepts. I hope to have contributed with my humble point of view and I would be happy to know about yours, so don't hesitate to leave a comment!