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Patient advocacy: working with and for the patient
Patient advocacy: working with and for the patient
Hello my name is Diego Villalón. I am social worker and patient advocates in MÁS QUE IDEAS Foundation Our organization is a non-profit and independent and independent organization which aims to increase quality of life and health of populations, especially people living with disease, both patienents and caregivers. My personal and professional background in healthcare comes from different cancer patients organizations when I start.. I got involved in 2003 after my cancer diagnosis. I was diagnosed with Hodgkin’s Lymphoma. It’s a type of cancer that affects the immune system, After the initial shock, because you never expect to have cancer when you are 23 years old. Imagine my family and caregivers if they were completely scared about these news.
After that we, I received chemotherapy and ten months later I got my recovered So, everything went well, but what I didn’t expect is that after cancer, I had to deal with different difficulties, emotional, sexual, physical difficulties that made me very difficult to go back to my normal and regular life. That was a specific moment I decided to got involved in cancer and patients organization. My first year, my first motivations to become a patient advocates was the.. about… was to offer information and support to other people with a similar experience like me.
So my first year as advocates, I entirely…focused on offering emotional support to these people and to provide like comprehensive information about all these processes, to make them to get a better manage of the disease, and also to get, to get better control of their… of their life. But what is true is that two or three years later I discovered that patients advocates can work in different work in areas. So I started to work in a more professional way, and I started to get more training activity and more educational resources to be a better better parent advocates.
During ten years, I’ve been involved in different cancer patient’s organizations and what I learned in working with cancer patients and relatives is that firstly, the experience of living with this disease , disease is completely unique for that, for each person. It depends on the type of cancer you have; it depends on the treatments that you received; also, it depends on the external and internal resources of the patients The prognosis is crucial. It’s not the same if you have for example, a diagnosis of an early stage melanoma, that a metastatic melanoma, and also it’s important and relevant the access of the patients to health care and other support services.
So we need to consider, we need to to personalize all the support services to each person. That’s something that we have to do in…in digital health if we are doing an app; we are doing a technology, it will be adaptable for each person to better manage the diseases Also, what I learned is that cancer affects, of course to the physical health of people. For example, it’s very frequent, very frequent to have some physical side effects like… for example, health loss or fatigue or even pain that affects daily life of people. And also, depending on the time on the, on the cancer or the, or the treatments, some, some functional problems can emerge.
For example, lymphedema cause mobility problems but when I saw is that the emotional implications are very strong there is strong evidence about the psychological impact of cancer in patients and also caregivers. Most of them, a lot of them may have feelings of loneliness, fear, anger, and it is important to promote projects and initiatives to give them the opportunity to manage these emotions in a proper way. And also we shouldn’t forget the social implications associated to cancer because the family, for example, they are also affected by cancer. We need to be, we need to integrate the point of view in our, in our health interventions Also to think about the work and economical consequences of the disease.
There are many people that lost their jobs. There are many people that have, that their incomes are reduces and their expenses increase because of the cancer diagnosis. so we need to have like, like a big overview of the person and to treat the person not to treat the disease. That this is crucial. What I learned also working with cancer patient is that we need to be, we need to be focused not only in the people in the person who is under treatment but also the people that are around him or her. Like, for example, friends, friends, family and the rest, etc. And we need to be focused also in all the difficult, difficult that emerged after cancer.
And totally, I think that we need to…work with cancer patient with relatives from different points of view. To try to solve, to response and to give solutions to the different project… to the different projects that emerge after diagnosis.
In this session, Diege Villalon, the co-founder and president of MÁS Que IDEAS Foundation, will give a short introduction of what they want to do in this foundation.
The MÁS Que IDEAS Foundation is an independent and non-profit organization to network people who live with illness and promote the benefits of it. There are three keys of its work: illusion, commitment and transparency. With this spirit, it promote horizontal, creative, sustainable, ethical and rigorous projects in collaboration with the different socio-health agents in the world.
For example, one of its projects, “Lung cancer: challenges and solutions”, is co-organized with the Spanish Association of Lung Cancer Patients. Three topics of great interest around lung cancer are discussed:
- Should we use screening techniques in lung cancer?
- What treatments are offering better results?
- How to work to reduce smoking without stigmatizing the person with lung cancer?
Digital health technologies might be innovated from these questions.
Guest Educator:
This article is from the online course:
Digital Health for Cancer Management: Smart Health Technologies in Complex Diseases
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This article is from the free online
Digital Health for Cancer Management: Smart Health Technologies in Complex Diseases
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