Comunidad terapéutica para pacientes con trastornos del movimiento.

Comunidad terapéutica para pacientes con trastornos del movimiento.

Chile
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

CETRAM is a community of individuals and associations with different motivations, beliefs and cultures, united by a common ideal; “to support each other when facing an illness and its consequences”. A person that is suffering from an illness starts a process , along with her/his family that tests the physical and psychological structure that has multiple impacts in their lives. The focus of the intervention is to provide an organization centered in empowering them.
Our community is born from different fields related to illnesses, social and medical, at a horizontal level.
Empowerment is not possible without participation, it must include the entire stake holders such as patients and their families, organizations they belong to and those providing medical care.
Our project is integrated by four institutions: Foundation distonia (www.distonia.cl) for those suffering from Dystonia and their families, Agrupacion de amigos de Parkinson (www.amigosparkinson.cl) for those suffering from Parkinson and their families, Corporación Centro de trastornos del Movimiento (www.cetram.org) for professionals working with the Centre and the Facultad de Ciencias Medicas de la Universidad de Santiago (www.fcm.usach.cl).

About You
Location
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Your idea
Focus of activity

Service/process

Year the initiative began (yyyy)

2003

Positioning of your initiative on the mosaic diagram
Which of these barriers is the primary focus of your work?

Patients not empowered

Which of the principles is the primary focus of your work?

Center consumers in business model

If you believe some other barrier or principle should be included in the mosaic, please describe it and how it would affect the positioning of your initiative in the mosaic:

This field has not been completed

Innovation
Define the innovation

CETRAM is a community of individuals and associations with different motivations, beliefs and cultures, united by a common ideal; “to support each other when facing an illness and its consequences”. A person that is suffering from an illness starts a process , along with her/his family that tests the physical and psychological structure that has multiple impacts in their lives. The focus of the intervention is to provide an organization centered in empowering them.
Our community is born from different fields related to illnesses, social and medical, at a horizontal level.
Empowerment is not possible without participation, it must include the entire stake holders such as patients and their families, organizations they belong to and those providing medical care.
Our project is integrated by four institutions: Foundation distonia (www.distonia.cl) for those suffering from Dystonia and their families, Agrupacion de amigos de Parkinson (www.amigosparkinson.cl) for those suffering from Parkinson and their families, Corporación Centro de trastornos del Movimiento (www.cetram.org) for professionals working with the Centre and the Facultad de Ciencias Medicas de la Universidad de Santiago (www.fcm.usach.cl).

Context for Disruption:

the initiative is centered in an integral vision of the patient who suffers from a motion illness and how his/her quality of life can be improved, giving this person an active roles in his/her treatment. This is done through a process of medical care, rehab, administration and social action, each one of the them with their coordinators.
Each one of these represents a direct line of action that in the short term will focus in improving the patient quality of life. We offer a platform for the presentation of social claims and a way to affect public policy especially give the low coverage on medicines, engaging in bulk purchases of medicines and providing the patients with better prices.
The long term work is centered in the research and teaching that aims at proving the usefulness of our approach from an academic point of view. This work is done at the undergraduate level of med school, occupational therapy, physiotherapy and at a graduate level in neurology and occupational therapy.
The strategy consists in providing training in each area of specialization but also living a more global vision.

Delivery Model

the target population received direct service under the following guidelines:
CETRAM is a nonprofit orgnization, centered in providing quality services for physically challenged patients independently of their socioeconomic situation.
There will be differentiated rates once an assessment of the patients income is done. CETRAM doesn’t aim at decrease the demand for medical services but rather provide a much more integral approach towards medic care.
We look at empowering the patients so that their view is taken into account when provided with a treatment.
All the staff at CETRAM shares the same values and they strive to empower the patients to become part of the decision making process regarding their treatment.
The long term impact is centered in education and training to incorporate the research done on the patients views and needs.
The communication mechanisms to reach out to the community are posters and triptychs posted through out the community and a website that had already 17,000 hits.

Key Operational Partnerships

In 2006 we held our first meetings for leaders from Parkinson and Dystonia organizations in Antofagasta, Viña del Mar, Linares, Concepción y Santiago, as part of our round tables sessions on motion related illnesses.
We exchanges experiences and what came out from the meetings was the need of a more close contact among the organizations and the promotion of new organizations. Objectives:
1.- to Exchange work experiences, in order to improve the management of the participating groups.
2.- to Fortify the networks of support among groups of the different regions of the country that are considered in the project.
3.- to qualify and to educate the patients, family and community in general, in relation to motion related illnesses
4.- to Increase the participation of the people that suffer from motion illnesses in the decisions with respect to their health.

Impact
Financial Model

A system of multiple financing has been established with an extensive range of products and medicines research services for the pharmaceutical industry for the purchase of medicines and medical attention service associates to rehabilitation. Research grants to students and organization of scientific events. All this products finance the activities of the center, the activities in the area of rehabilitation are generally subsidized by other areas since itself is not financed. Inside the guidelines a differentiated rate has been established, relating to the income of the user. Currently the 85% of the people that use our services contribute with some income in the meantime a 15% do not have incomes and they are cared for free. It should be considered that in spite of contributing with some income in majority of the cases do not cover the costs.

What is your annual operating budget?

83%

What are your current sources of revenue? (please list any sources that are foundation grants)

This structure of multiple financing permits to maintain a central economic stability that at present has not arrived at its break-even point the goal of three years was to arrive al point equilibrium, the idea is to increase the number of products and services in the same modality previously described. the business plan has a new idea to generate new services such as the service of adaptations in the home for people with motion disabilities , service of foreign pharmacy (acquisition of unavailable products abroad) for the users that require it. Increasing the number users, through joint work with the patients in the regions. Currently the beneficiaries contribute with a 40% of the income through the purchase of services and products.

Effectiveness

In a joint work with the foundation for distonía we managed to implement the first national pilot project of injection of botulinic toxin in hospitals through out the country, establishing botulinic toxin injection centers in the following hospitals: hospital Salvador Santiago of east area Chile, hospital San José Santiago of Chile north area, hospital Padre Hurtado Santiago of Chile south area east, hospital Of flax fields, South of Chile, regional hospital of Conception, South of Chile. This program is initiated under the civic supervision through the Foundation Distonía and with the technical support of ours centre. an example of this was delivery of a list of 200 patient beneficiaries of this program that were attended in our center to be transferred to the different areas with the object to incorporate this benefit for free including the medication and the medical attention. The implementation of the program was supervised a report delivered to the department of health with the results of this work, in the cases where problems existed for the implementation of the center covered the cost for of example in the case the hospital Padre Hurtado the doctor responsible for the injections was sick and the center contributed with the necessary professional work, so that the program and the department of health delivered the necessary medicine to benefit the patients of that area. In this sense it has continued supporting also the technical aspects for the acquisition of medicine providing the necessary technical bases for the acquisition of the botulinic toxin that will be incorporated national pilot project.

Which element of the program proved itself most effective?

Of the multiple areas of the program, the generation of new leaders from the people that suffer motion disabilities, resulted in the creation of regional independent new headquarters, the creation of programs for community radio, creation of municipal programs in charge of the users among others. The fight for rights at the department of health level has also been successful. The training especially of postgraduate course has turned out effective in the short term with the creation of various centers with similar philosophies, the undergraduate education and its impact is more difficult to assess in the short term and in time we expect to see its results, in the same way that the impact that has the clinical investigation centered in the users.

Number of clients in the last year?

Number of people
2006-05 189 150
2006-06 142 124
2006-07 102 102
2006-08 124 116
2006-09 215 191
2006-10 215 141
2006-11 152 111
2006-12 122 103
2007-01 161 147
2007-02* 16 16
2007-03 111 103
2007-04 145 112
Total general 1694 651

Year 2006
Level Number of students Hour of teaching
Undergraduate 53 1990
Postgraduate 6 1056
Continuing education 120 1360

What is the potential demand?

The potential demand is greater than capacity of the center, and is outside of the conception of the center to increase its capacity until covering the demand, the idea is to deliver elements to the health community through education so that it can offer services under our guidelines, empowering their users and integrating them as assets in their process of rehabilitation. This strategy is more solid than the individual attention in which our students are trained. The incorporation of the users as the agents of the administration of the therapeutic health centers will depend on public policies, in this sense many countries have incorporated in the speech the civic participation in different instances some examples of it are the public accounts, consultative counsels among others. The contribution of our community in this sense can be based on the systematization of the experience and its results.

Scaling up Strategy

Maintaining the center of attention active so it ca be a place of training for several generations of health professionals that will form a critical mass of people that value the method. The application of the method of cross empowerment is of low impact and therefore should tend to the replication of the model. The replication will be facilitated directly through the networks with other associations of patients, professional groups and institutes of education. For this it is required fro the educator to set the bases of the systematization of the different edges of the method, and first present the methodological bases for the participatory education in health and in a second instance the methodology for the participatory administration in health. Developing research centered in the client and its perception of the problems related to their illness validating the biomedical perception by way of establishing a bridge between the two worlds. An example of it is the current line of research on perception of the employment performance in people with Parkinson and the associated factors.

Stage of the initiative:

1

Expansion plan:

In the first phase of consolidation we want to reach a business equilibrium level by establishing the necessary services for it: medic care, attention in the community that is to say support the person with motion disabilities needs at their home, of needs the person with motor inconveniences in its home, influence in the public policies, and the creation of a home for terminal patients with motion disabilities under the concepts empowerment as a medium term stage.

Origin of the Initiative

This initiative comes from a group of professionals that along with groups of patient from foundation distonía and group of friends from Parkinson they founded this community in 2003, the initial idea was to establish a new form of relating to each other, by engaging in strategic planning and defining our mission and strategies of the organization. Initially it was presented with a process to resolve the problematic people that suffered motion disabilities, evolving in a community towards 2006.

Sustainability
What are your two main challenges to finance the growth of your initiative

El sistema de atención de salud en nuestra realidad (Chile) se basa en el pago parcial por acciones como podría ser atención médica, fonoaudiologo, kinesiologo y se excluyen algunas prestaciones como los terapeutas ocupacionales, por lo que se genera una falta de cobertura. Otra dificultad es la falta de recursos para acceder a los procesos de rehabilitación que implican el accionar de varios profesionales. En la medida en que la enfermedad avanza aparecen mayores dificultades para el desplazamiento refiriéndose que el equipo de rehabilitación vaya a donde está el paciente o facilite su desplazamiento a lugar atención, limitante mayor en nuestra realidad.
Como nuestra estrategia a largo plazo es la educación de los profesionales de salud para que faciliten el empoderamiento la mayor limitación en este sentido es la validación del método para lo que se requiere financiar investigación orientada en este sentido, el mundo académico de la salud existen severas limitaciones para este tipo de investigaciones, que podríamos decir son huérfanas en cuanto financiamiento.

How did you hear about this contest and what is your main incentive to participate?

Website de Ashoka

The Story
Do you have an annual financial statement?

Yes

Do you currently have an annual financial statement that tracks profit/loss?

Una primer etapa se plantea llegar al punto de equilibrio mediante una generación de servicios que son ofrecidos a la comunidad para ello ya existe una base de ingresos que permiten estructuración de estos servicios, la principal limitación probablemente está en obtener personal que estructure adecuadamente un plan de negocios más allá de los servicios que se ofrecen de decir la generación del área comercial, en este sentido la mayor dificultad para una empresa social el definirse a invertir los escasos recursos que logra generar en la contratación de personal con este enfoque, que resulta costoso y con resultados inciertos se estima una inversión aproximada de $ 100.000 para tres años.
Alcanzado el punto de equilibrio y con la generación de ganancias razonables, se deberá focalizar la inversión orientándolo en a la creación de la casa de acogida para personas con trastornos del movimiento como nuevo plan de negocio que requeriría un inversión aproximada de 200 a 250 miles de dólares considerando construcción y su implementación. La idea es implementar una unidad pequeña con 6 camas orientada a las necesidades de las personas de la zona, pensando en el derecho de la individuo de permanecer insertos en su comunidad y cultura para nuevamente la estrategia de a largo plazo es servir de modelo y replicar a en base a la docencia.

Please describe the amount (and/or type) of funding you need to implement your initiative, at year 1 and at year 5.

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