Pacientes Líderes

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Pacientes Líderes

Herts, Reino UnidoHerts, Reino Unido
Tipo de organización: 
Etapa del Proyecto:
$10,000 - $50,000
Resumen del Proyecto
Presentación del Proyecto!

Resumen conciso: Ayúdenos a presentar esta solución! Proporcione una explicación en 3 o 4 frases cortas.

Proporciona el aprendizaje y apoyo a los pacientes y usuarios del servicio para que puedan influenciar cambios en la salud y la atención de la salud.

About Project

Problema: ¿Qué problema está tratando de abordar este proyecto?

Health services face unprecedented challenges. But patients are seen as the 'problem' and are an untapped resource. Professionals (clinical/managerial) fail to recognise patients as leaders who can co-produce solutions & current approaches to engaging patients and the public fail to achieve significant impact. Few services are organised, run by, or influenced by patients or users. Current approaches to building the capacity of patient representatives, activists and community leaders are ad-hoc & under-funded. Patients feel isolated & disempowered. What is on offer does not meet practical or emotional & psychological needs. Patient leaders lack the knowledge, skills and confidence to build dialogue, create trusting relationships, influence power, enhance accountability & improve services.

Solución: cuál es la solución propuesta? Por favor sé específico!

The Centre for Patient Leaders will: (a) provide learning and support for patient leaders (those seeking to transform services and those leading health improvement in the community) b) develop an online network and community of practice for emerging patient leaders (c) be a pool of talented and high quality patient leaders, from which health organisations can draw to input into health improvement activities (d) be a social movement for change that challenges and alters the fundamental power structures of health care (e) Enable 'graduates' from The Centre to become accredited Coaches and Facilitators. They can then earn an income through The Centre that fits in with their lifestyle and health needs. They will also become role models for the empowered, creative, proactive and facilitative approach to change that we are hoping to promote within their local communities. For more information, see: 'The Rise of the Patient Leader' at
Impact: How does it Work

Ejemplo: Guíenos a través de un ejemplo/s específico/s de cómo esta solución hace la diferencia; incluya sus actividades principales.

We run learning programmes, action learning sets, telephone coaching &(in the future) online learning programmes for patient leaders. Our major offer 'the effective patient leader' is a five session learning programme consisting of action learning, skills-based sessions & telephone coaching. We have run seven such independently evaluated courses that achieved significant outcomes (for individuals and organisations) and have about 80 alumni. We develop the personal management and leadership capabilities (including resiliency, self-efficacy, motivation, confidence) that allow patient leaders to lead change & practice these qualities on an ongoing project/initiative. We focus on supporting them to to take control of their lives and futures. Participants have included: - community leaders who successfully developed community projects, such as nutrition clubs for people from black/ethnic minorities; setting up drop in centres for elderly people; projects on behalf of people with HIV; mental health service user forums, etc - patient representatives with increased confidence to challenge decision making and push for service change (e.g. a Hospital Governor who was able to input into quality issues; an activist who developed a project on diabetes self-help that received local authority funding; - individuals with particular conditions progressing by taking up opportunities in fora, project, patient organisations etc In summary: We offer Patient Leaders support to make a difference through (1) learning (2) connection to a community of practice (3) ongoing support

Mercado: ¿Quién mas está abordando el problema aquí descrito ? ¿Cómo difiere el proyecto propuesto de esos enfoques?

Few organisations provide 'training' for patient representatives and even fewer have identified 'patients as leaders'. Where training is provided for patient representatives, this is often based solely on the needs of the institution and is didactic and depends largely on providing people with knowledge of the 'system' rather than the skills necessary to negotiate their way around or deal with power. Our competitors largely focus on building the capacity of organisations and health professionals - not the capacity of patient leaders themselves. Or they focus on the 'techniques' of engagement and do little to shift cultures and systems. We are committed to empowering a community of practitioners (patients) who will co-create the future success of the Centre for Patient Leadership

Historia fundacional

My mental health problems were my major personal crisis. When I recovered, I wanted to change things for the better for others. I became a patient representative and policy advocate. But I received no learning, support or further opportunities. Meanwhile, health professionals with whom I worked received continual professional development and organisational support. This venture provides the learning and support that I needed, but never got. (David Gilbert) I developed severe RA in my early 20’s. I got little support from the Health Services. I was seen not as a person living with Arthritis but as a set of symptoms and physical ailments to be treated and ‘cured’. When I was treated the system seemed geared to the needs of the medical/health professionals. Rarely was I asked about what I needed or wanted. I realised that if I wanted things to change then I needed to go on my own personal journey and find others who I could work with who had a similar experience to me. Mark Doughty
Sobre ti
InHealth Associates
Sobre ti




Sobre tu organización
Nombre de la organización

InHealth Associates

País de la organización

, BNE, Herts

Países en donde este proyecto está creando impacto social


¿Cuánto tiempo ha estado operando la organización?

1-5 años

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¿Cuánto tiempo se lleva poniendo en práctica tu iniciativa?

Operando entre 1-5 años

¿Cuál de las siguientes describe mejor la(s) barrera(s)s a la que da respuesta tu innovación? Elige hasta dos.

Acceso, Costo.

Impacto social
Por favor, describe el objetivo de tu iniciativa: un resumen de lo que están tratando de lograr

We want to:
-enable individuals to develop their confidence and self belief and develop the skills to make effective changes in their own lives and develop the skills of self leadership.
- ensure that patient leaders (those seeking to transform the system or their community's well-being) receive the knowledge, skills and behaviours necessary to influence change
- change the balance of power in health and healthcare so that patients and professionals can better share decisions
- provide a high quality resource (patient leaders) able to support constructive improvements in health and healthcare
- ensure that health and healthcare improvement is sustained in the current political and economic climate
- Create role models and mentors that inspire others to make changes in their lives

¿Cuál ha sido el impacto de la solución hasta la fecha?

Independent evaluation and outcomes yielded are at several levels:
- better understanding of systems, increased abilities to cope with professionals and power issues, enhanced ability to ask powerful questions that can influence change.
- participants report significant improvements in health and well-being, increase in confidence, self-esteem and ability to influence change, decision making and in their own projects
- organisations report that participants display improved capabilities in the organisational environment
- there are reports of improved decision making (transparency, accountability) and changes in services
- User involvement has increased and cultural change taken place in organisations to which individuals belong
- examples include: participants funded for diabetes peer-education project; one invited onto Ministerial Advisory Group for mental health; one set up older people drop-in centre; another now on national task force for commissioning sickle-cell services

Cuál es tu impacto proyectado para los próximos 5 años?

We would like to be able to have delivered at least 100 learning programmes across the UK and to have delivered half that amount in other countries; our learning network would be international and have delivered online learning programmes and resources to several hundred patient and community leader around the world; from within our network, we would have trained up at least 50 leaders able to deliver their own programmes; our network of patient leaders would have contributed to at least 200 local and national involvement projects around the world and will have developed a community of practitioners who have a positive impact on the health within their communities and how it is being organised and managed.

¿Qué barreras pueden dificultar el éxito de tu proyecto? ¿Cómo planean superarlas?

The capacity to deliver a high quality learning product at scale is the most important factor alongside cost and access; We need to continue to provide relevant, high quality learning with a strong value base. Therefore we need to ensure we find the time and resources to spend time on the project. We plan to:
-Develop our networking skills to seek out advice, support and opportunities to find the resources we require
-Seek opportunities to creatively engage with organisations that might benefit from our vision and offer e.g. look to develop strategic partnerships with charities, voluntary organisation where we could add value by developing a tailored patient leadership programme for their members. Therefore look at opportunities to joint fund raise
-Identify private sector partners.

Las iniciativas ganadoras presentan un plan fuerte de cómo van a alcanzar y realizar un seguimiento del crecimiento. Identifica tus metas a seis meses para el crecimiento de tu impacto

Develop a strong online presence for the Centre and further develop our curriculum offer and our business model

Identifica tres grandes tareas que tendrás que completar para llegar a las metas de seis meses.
Tarea 1

Recruit online development manager or find the support to help us develop the online learning vehicle and web presence

Tarea 2

Develop a marketing strategy and identify target market for beneficiaries (patient leaders) and customers (funders)

Tarea 3

Develop online resources and materials for target market including the Train the Facilitator and Coach/Mentor programmes

¡Ahora piensa en grande! Identifica tu meta de impacto a 12 meses.

Develop package of learning offers at scale (UK-wide) that includes face to face and online learning and fund our business model

Identifica tres grandes tareas que tendrás que completar para llegar a tu meta de impacto a 12 meses
Tarea 1

Recruit a business manager and have five patient leadership programmes funded and running with five strategic partners

Tarea 2

Train the Facilitators and Coach/Mentor programmes funded and run successfully at least once.

Tarea 3

Successfully be marketing our vision/work in Wales, Scotland and Ireland and be able to match capacity to demand

Cuéntanos sobre tus alianzas.

We have been funded by a variety of local organisations, such as the CLAHRC in NW London, Croydon Voluntary Action and NHS Hammersmith and Fulham. We are in discussions with the CLAHRC about partnerships. We are also in discussion with several patient and voluntary sector organisations (e.g. Turning Point, National Rheumatoid Arthritis Society, MIND), Leadership Academies and a range of Clinical Commissioning Groups. Together with the Centre for Innovation in Healthcare Management in Leeds University, we are working on a research inquiry into patient leadership and patient entrepreneurs.

¿Actualmente te estás dirigiendo a otras poblaciones, lugares o los mercados para tu innovación? Si es así, ¿dónde y por qué?

Our work covers a broad spectrum of Patient Leaders. In turns of customers, we are considering approaching the private sector as funders. We think that Hospital Foundation Trusts and large charities may also be keen to develop their own 'lay' leaders within their specific environments.

We wish to target charitable/voluntary organisations in order to develop strategic partnerships so that we can offer patient leadership programmes tailored to their memberships. With the possibility for then developing accredited facilitators and coaches to ensure that they self manage its future growth.

¿Qué tipo de sistema operativo y factores internos de la organización hacen que tu innovación sea un éxito?

We need to build infrastructure and develop our marketing potential in order to make a stronger business case for the work amongst health and healthcare organisations.

Our commitment to collaborative working includes giving people who get involved with the Centre the opportunity to guide its development. This co-production approach reflects our belief in empowerment and desire to see equal partnerships in health care between professionals and service users.

We will create the cultures and systems necessary internally to sustain this co-production approach. This includes also working only with trusted high-quality partners (individuals and organisations) committed to our values and ethos.

Por favor, pon en claro las necesidades u ofertas que hayas mencionado anteriormente y/o sugiere categorías de apoyo que no están especificadas en la lista

A key learning will be how to push forward collaborative ventures between our work and the private sector in order to create a win/win for both parties that stays true to the underlying values and principles that guide our work.
One of our key offers to be stressed is leveraging participants abilities to deal with complexity and change which comes as part of their daily living with their Health.