Marta Pérez
Ashoka Fellow desde 2022   |   Spain

Marta Perez

Fundación Segunda Parte
Marta is creating a new architecture in the Spanish health system positioning inclusive sports as an essential right of all patients with acquired brain injury (ABI), significantly improving their…
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This description of Marta Perez's work was prepared when Marta Perez was elected to the Ashoka Fellowship in 2022.

Introducción

Marta is creating a new architecture in the Spanish health system positioning inclusive sports as an essential right of all patients with acquired brain injury (ABI), significantly improving their quality of life, and shifting their role from lifelong patients to active citizens.

La idea nueva

Half a million people in Spain live with acquired brain injury (ABI), a condition resulting from sudden traumatic or nontraumatic accidents that limits their physical, cognitive, and emotional abilities as well as their capacity to contribute to society. The Spanish health care system focuses on intervention at the very first phases of the ABI, making sure that more and more people survive after events such as strokes, but also increasing the number of patients with long-term chronic disabilities.

Marta created Fundación Segunda Parte to build a new architecture in the current health care system teaming up with neurologists, municipalities, universities of physical education, and patients to ensure that all people with ABI can re-acquire the resources and the agency needed to be givers and contribute to society for the rest of their life. To do so, she has re-invented the process through which chronic patients pass by including a unique sports methodology (PASABI) that encompasses eight types of activities that dramatically improve the health and the quality of life of the patients and their families, with impressive results validated through academic field studies. PASABI combines and leverages the different abilities of each and every one of the participants: even the most seriously affected patient, with extremely limited mobility, can carry out the activities designed by Marta as well as perform group sports activities with competitive capacity. Not only does PASABI improve physical ability, but it also improves cognitive and behavioral dimensions, due to the socialization factor which is key in the methodology. People with ABI are the protagonists: they champion the solution, they are volunteers, spokespersons, and ambassadors.

One of the most powerful aspects of Marta's innovation is that the methodology is perfectly embeddable in hospitals and rehabilitation centers and, most importantly, can be easily implemented in public and private sports centers, shifting their role from a preventive part of the health system to a rehabilitative one and making the solution seamlessly accessible for all patients. Marta is enabling the widespread existence of inclusive spaces to allow everyone with ABI to practice sports, in order to reinforce the autonomy and the agency needed to be an active citizen in many other contexts.

El problema

500,000 people in Spain live with ABI, a number that is expected to increase by threefold in the coming years due to a variety of reasons. Brain stroke, which is the cause of 80% of ABI, will increase its incidence by 35% in 2035. 1 out of 3 citizens could suffer a brain stroke as a direct consequence of stress, unhealthy eating habits, and a sedentary lifestyle. This silent pandemic, with 120,000 strokes already happening each year, determines functional aftereffects of various kinds and degrees of severity. Medical and scientific advances make it possible to save more and more lives after traumatic and nontraumatic accidents such as head injuries, stroke, or brain tumors, but, at the same time, this increases the number of people with acquired disabilities. For example, stroke is the second cause of dementia and the first cause of disability in adults. In Spain there is no public post-hospital care for the rehabilitation of aftereffects, drastically limiting long-term recovery of people with ABI.

The health care treatment for ABI is very much centered on the immediate effects during the first six months after the accident happens (acute phase and sub-acute phase), while there is no protocol for the medium- and long-term phase (chronic phase), when the affected patients truly experience the implications of their acquired condition. Patients are sent home with no proper treatment for the long-term and with no roadmap to live with this new situation. If patients fail to exercise and have a healthy lifestyle, their health relapses again, leading to secondary problems such as mental health issues, becoming overweight, hypertension, or circulatory problems.

70% of the people with ABI have some kind of limitation in daily activities, affecting their social, work, family, and emotional lives. 40% have depression as a direct consequence of their acquired condition. They are much more likely to have a severe dependency and generate unnecessary health costs. For example, each person who suffered a stroke has a cost of €27,000 per year in medical care, 70% more than a healthy person.

The capacity of people with ABI to have access to the existing long-term rehabilitation resources is limited by different factors. On one side, the family’s socio-economic status is a deciding factor in determining access to private rehabilitation centers, leading to high levels of disability and exclusion for patients who are unable to afford it. On the other side, most people with ABI live with multidimensional alterations (physical, cognitive, emotional, and behavioral) that prevent them being admitted to centers or institutions that only accept patients with one type of disability, but not those who present multiple health issues.

The particularity of these survivors is that they have been full members of society, with all the resources and the agency needed to play the role of active citizens and, from one day to the next, they're disempowered and can no longer contribute to society anymore. However, they have known what it means to be a contributor, and therefore the effect of exclusion and marginalization is even stronger.

La estrategia

Marta is creating a new architecture in the health care system in Spain, leveraging and shifting the role of patients, neurologists, municipalities, and universities, so that anyone with ABI can practice sports in inclusive environments to have a better life and the power to contribute to society. This kind of change in the national health system is a complex process which has to be done region by region and with a combination of a push and a pull strategy.

On the one hand, Marta is raising awareness and fostering demand. By working with the neurologist community and organizations that directly support people with ABI, she is building commitment from doctors and medical specialists, so that they can recommend and promote sports practice among their patients. In parallel, she works with municipalities, sports centers, and universities, increasing the offer of spaces and professionals for people with ABI to practice sports in inclusive contexts.

Marta’s key levers to develop her strategy are: 1) A unique, inclusive, and scalable methodology; 2) Evidence-based arguments for sanitary prescription; and 3) Partnerships with public allies and universities to increase the offer of physical activity.

1. Unique, inclusive, and scalable methodology

Marta did her internship for her Sports Degree at the State Center for Attention to Acquired Brain Injury and discovered the reality for people with ABI entering their chronic phase, after their rehabilitation finishes and there is no next step/plan for them. She had the intuition that these people could have a better quality of life if they used sports as a treatment. By combining the expertise and knowledge acquired during her studies, she launched a small pilot scheme, which was the first Sports Club for people with ABI with seven patients, teaching them how to swim after their brain injury.

Over the past 10 years, Marta has been creating, consolidating, and validating a pioneer sports methodology (PASABI), aimed at patients with ABI but inclusive for all other people, with or without disabilities. PASABI encompasses eight types of activities that are based on the findings of her research, including Water Activity, Swimming, Paddle Tennis, Initiation to Football and Initiation to Athletics, Agility, Virtual Reality, and Boccia. It includes gamification as a key component to increase fun, socialization, interactions, instinctive learning, and the development of complex skills. A typical PASABI session includes a first phase with a warm-up exercise (5–10 min of joint mobility tasks), a second phase with at least three specific analytical exercises, and an interactive part with at least one game (45 min) and, finally, a third phase of returning to the calm with breathing control tasks and stretching the muscle groups involved (5-10 min).

The success of Marta’s methodology is based on the fact that it is perfectly embeddable not only in hospitals and rehabilitation centers, but also in public and private sports centers, since it is vital that PASABI users can carry out their sports therapy near their place of residence and feel comfortable in the sports environment. This is the reason why the implication of public and private gyms is a key factor in the model. To date, 13 municipal sports centers, two renowned hospitals and two neuro-rehabilitation centers at the national level are already implementing Marta’s solution.

2. Evidence-based arguments for sanitary prescription

The benefits of physical activity for people with ABI in the sub-acute phase have been widely studied in the literature, but, before Marta, there was very little research regarding the chronic phase. Marta has been a pioneer in scientifically demonstrating the benefits of sports for chronic ABI patients, and she has led six field research programs with two leading Universities (Polytechnic University of Madrid and Francisco de Vitoria) that have been published in international journals of open access.

These studies have demonstrated for the first time that sports programs, and PASABI in particular, represent a key tool to improve not only the physical abilities of patients in the chronic phase of ABI, but also their cognitive and behavioral after-effects, their health-related-quality of life and their reintegration into the community to be active contributors in society. The scientific validation of the model has been essential to get the medical community on board and ensure that PASABI can be prescribed to patients. Marta is on the way to converting all neurologists, rehabilitation, and family doctors into prescribers of her model, sharing the benefits of doing sports and recommending PASABI with their patients, addressing a demand that the health care system is not capable of covering, due to the lack of resources for the chronic phase of ABI.

As a result of her evidence-based conclusions, Marta is considered a reference expert in the long-term recovery of people with ABI, and she has been able to influence the debate at all main national neurological forums. This year, for example, she will present her model to all the neurologists of the community of Madrid at a convention on Strokes and Solutions. By working directly with neurologists and medical specialists, her ultimate goal is to have a "sports prescription" protocol and increase the number of ABI patients who includes sports in their life.

3. Partnerships with public allies and universities to increase the offer of physical activity

Marta is working directly with municipalities to shift the role of public gyms and ensure that they offer PASABI, also considering that these infrastructures are frequently underused during working hours and can therefore take advantage from Marta’s solution. Changing the role of public sports centers has two levers: allocating spaces and assigning qualified personnel. Marta and her team have designed a set of best practices which sets out exactly what kinds of spaces are needed (size, access, facilities, etc.) and are pushing for these spaces to be formalized in current gyms and to be included in any new specifications for gyms that are to be built. On the other hand, she is working with governmental bodies on a regional and national level to modify the contracting requirements of sports professionals in public sports facilities, advancing in the professionalization of this area to avoid having the responsibility of working with people with disabilities assigned only to volunteers or unqualified people.

Marta is also collaborating with four Universities that teach the Degree in Physical Activity and Sports Sciences, including content on sports and brain injury in the adapted sports subjects. Simultaneously, she is designing a training and accreditation model for sports professionals (Expert in Sport and Neurological Injury) that ensures high quality standards for the application of sports programs with people with (ABI) and she is setting up an online platform with open access for sharing the knowledge created over the last decade. Municipalities and universities are paying for her training and advising services. So far, in terms of regulatory changes, she has accomplished a significant milestone at the Spanish National Center for Attention to Brain Injury, dependent of the Ministry of Social Affairs, whereby instructors must have graduated in Physical Activity and Sports Sciences.

Marta has already managed to scale her project in nine districts of the Community of Madrid which represents approximately 10% of the Spanish population with ABI. This lays the foundation for an agile scaling process to smaller municipalities, since the know-how, the stakeholders, and their new roles are already established and there is less bureaucracy and a closer relationship between the different actors of the solution (health authorities, town halls, universities...). She is currently replicating her model in La Rioja, a northern region in Spain, and in the Canary Islands, whilst she keeps growing in Madrid and exploring other regions.

Marta’s main partner for the replication in new regions is the Spanish Federation of Brain Injury, which works with the competent entities of each territory and connects Marta with them. Thanks to this partnership, her project is already a reality in the Canary Islands. In the mid-term, she envisions that her model will be scaled all over the country and beyond, by starting the replication in Europe. She is already working with three different partners to co-design an international project under ERASMUS+, a large European program that would allow her to share knowledge and best practices with four countries.

La persona

Marta is from a small town in the north of Spain where her teachers remember her as “a crusader for justice” From the age of six, Marta was key in detecting and informing her teachers about the injustices that occurred in the classroom and when they asked her what she wanted to be when she grew up, she always answered that she would dedicate her time to helping others.

Her mother always remembers her playing with the playmobiles, recreating emergency situations that Marta had seen on the news and solving the situation. This great empathy came from her father, her great reference, a family doctor who decided to practice only as a public health doctor, refusing on principle to work in the private sector. It was her father who also encouraged her in sports since she was a child, and it was her great passion.

During her youth, Marta wanted to change the things she didn't like and decided to join a political party. There was no Youth Chapter of the political party that she wanted to join in her town, so she decided to set it up herself alongside a friend, convincing other young people to join them. This experience allowed her to participate in national conferences and learn about generating ideas, debate, and creating proposals to build a better society and understanding how young people could actively participate in change.

However, what Marta has always enjoyed the most has been sports, where she always felt happy and at her best. In university, she decided to study sports science. In her penultimate year of studies, she discovered adapted sports and specialized in it, completing her internship at the State Center for Attention to Brain Injury (CEADAC). Marta and a colleague observed that these people who were in the rehabilitation phase ended their stay at the Center after a few months and returned home in a situation of great vulnerability, with a past full of life and a hopeless future, with a great lack of opportunities. They then decided to create a Sports Club in 2011 which they called the "Sport for DCA Association". After 11 years of learning and generating knowledge about a very little-explored medical area (and completing two doctoral theses) and having successfully implemented it in Madrid, the organization evolved into “Second Part Foundation” in 2021 to scale her impact nationally and create a board of experts.