WEBVTT Kind: captions Language: en 00:00:07.080 --> 00:00:10.520 Hello my name is Diego Villalón. I am social worker and 00:00:10.520 --> 00:00:13.360 patient advocates in MÁS QUE IDEAS Foundation 00:00:13.360 --> 00:00:17.920 Our organization is a non-profit and independent and independent organization 00:00:17.920 --> 00:00:21.160 which aims to increase quality of life and health of populations, 00:00:21.160 --> 00:00:25.920 especially people living with disease, both patienents and caregivers. 00:00:25.920 --> 00:00:29.960 My personal and professional background in healthcare comes from 00:00:29.960 --> 00:00:37.360 different cancer patients organizations when I start.. I got involved in 2003 after my cancer diagnosis. 00:00:37.360 --> 00:00:43.800 I was diagnosed with Hodgkin's Lymphoma. It's a type of cancer that affects the immune system, 00:00:43.800 --> 00:00:51.480 After the initial shock, because you never expect to have cancer when you are 23 years old. 00:00:51.480 --> 00:00:57.040 Imagine my family and caregivers if they were completely scared about these news. 00:00:57.040 --> 00:01:04.480 After that we, I received chemotherapy and ten months later I got my recovered 00:01:04.480 --> 00:01:09.640 So, everything went well, but what I didn't expect is that after cancer, 00:01:09.640 --> 00:01:15.480 I had to deal with different difficulties, emotional, sexual, physical difficulties 00:01:15.480 --> 00:01:19.960 that made me very difficult to go back to my normal and regular life. 00:01:19.960 --> 00:01:25.480 That was a specific moment I decided to got involved in cancer and patients organization. 00:01:25.480 --> 00:01:31.560 My first year, my first motivations to become a patient advocates was the.. about... 00:01:31.560 --> 00:01:38.320 was to offer information and support to other people with a similar experience like me. 00:01:38.320 --> 00:01:46.880 So my first year as advocates, I entirely...focused on offering emotional support to these people 00:01:46.880 --> 00:01:52.560 and to provide like comprehensive information about all these processes, 00:01:52.560 --> 00:01:56.080 to make them to get a better manage of the disease, 00:01:56.120 --> 00:02:00.680 and also to get, to get better control of their... of their life. 00:02:00.680 --> 00:02:04.920 But what is true is that two or three years later I discovered that 00:02:04.920 --> 00:02:08.560 patients advocates can work in different work in areas. 00:02:08.560 --> 00:02:12.320 So I started to work in a more professional way, 00:02:12.320 --> 00:02:15.560 and I started to get more training activity 00:02:15.560 --> 00:02:20.600 and more educational resources to be a better better parent advocates. 00:02:20.600 --> 00:02:26.400 During ten years, I've been involved in different cancer patient's organizations and what I learned in 00:02:26.400 --> 00:02:29.880 working with cancer patients and relatives is that firstly, 00:02:29.880 --> 00:02:35.560 the experience of living with this disease , disease is completely unique for that, for each person. 00:02:35.560 --> 00:02:40.720 It depends on the type of cancer you have; it depends on the treatments that you received; 00:02:40.720 --> 00:02:46.320 also, it depends on the external and internal resources of the patients 00:02:46.320 --> 00:02:49.880 The prognosis is crucial. It's not the same if you have 00:02:49.880 --> 00:02:52.920 for example, a diagnosis of an early stage melanoma, 00:02:52.920 --> 00:02:57.440 that a metastatic melanoma, and also it's important and relevant 00:02:57.440 --> 00:03:01.600 the access of the patients to health care and other support services. 00:03:01.600 --> 00:03:08.200 So we need to consider, we need to to personalize all the support services to each person. 00:03:08.200 --> 00:03:11.840 That's something that we have to do in...in digital health 00:03:11.840 --> 00:03:16.680 if we are doing an app; we are doing a technology, it will be adaptable 00:03:16.680 --> 00:03:19.800 for each person to better manage the diseases 00:03:19.800 --> 00:03:25.440 Also, what I learned is that cancer affects, of course to the physical health of people. 00:03:25.440 --> 00:03:31.360 For example, it's very frequent, very frequent to have some physical side effects like... 00:03:31.360 --> 00:03:36.520 for example, health loss or fatigue or even pain that affects daily life of people. 00:03:36.520 --> 00:03:42.120 And also, depending on the time on the, on the cancer or the, or the treatments, 00:03:42.120 --> 00:03:45.760 some, some functional problems can emerge. 00:03:45.760 --> 00:03:50.880 For example, lymphedema cause mobility problems but when I saw is that the 00:03:50.880 --> 00:03:55.560 emotional implications are very strong there is strong evidence about the 00:03:55.560 --> 00:04:00.480 psychological impact of cancer in patients and also caregivers. 00:04:00.480 --> 00:04:07.120 Most of them, a lot of them may have feelings of loneliness, fear, anger, 00:04:07.120 --> 00:04:12.800 and it is important to promote projects and initiatives to give them the opportunity to manage 00:04:12.800 --> 00:04:15.360 these emotions in a proper way. 00:04:15.360 --> 00:04:21.760 And also we shouldn't forget the social implications associated to cancer because 00:04:21.760 --> 00:04:25.600 the family, for example, they are also affected by cancer. 00:04:25.640 --> 00:04:32.080 We need to be, we need to integrate the point of view in our, in our health interventions 00:04:32.080 --> 00:04:37.500 Also to think about the work and economical consequences of the disease. 00:04:37.500 --> 00:04:43.140 There are many people that lost their jobs. There are many people that have, that their 00:04:43.140 --> 00:04:48.640 incomes are reduces and their expenses increase because of the cancer diagnosis. 00:04:48.680 --> 00:04:58.120 so we need to have like, like a big overview of the person and to treat the person not to treat the disease. 00:04:58.120 --> 00:05:02.440 That this is crucial. What I learned also working with cancer patient is that 00:05:02.440 --> 00:05:06.120 we need to be, we need to be focused not only in the people in the person 00:05:06.120 --> 00:05:10.440 who is under treatment but also the people that are around him or her. 00:05:10.440 --> 00:05:15.720 Like, for example, friends, friends, family and the rest, etc. 00:05:15.720 --> 00:05:21.760 And we need to be focused also in all the difficult, difficult that emerged after cancer. 00:05:21.760 --> 00:05:30.100 And totally, I think that we need to...work with cancer patient with relatives from different points of view. 00:05:30.100 --> 00:05:34.420 To try to solve, to response and to give solutions to the different project... 00:05:34.420 --> 00:05:39.460 to the different projects that emerge after diagnosis.