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Os irmãos Jamie e Ben criaram o PatientsLikeMe - uma plataforma que conecta pacientes com ELA

Partilhado por Joana Afonso PI a 09/08/2023 - 19:38

Sobre a solução

O conceito de PatientsLikeMe nasceu das experiências pessoais de seus cofundadores, a família Heywood. Um dos irmãos, Stephen Heywood, foi diagnosticado com ELA (Esclerose Lateral Amiotrófica) em 1999. Os Heywoods, incluindo os irmãos de Stephen, Benjamin e James, procuraram os melhores tratamentos e possíveis curas para Stephen. Eles reconheceram o valor dos dados e insights compartilhados do paciente para lidar com condições como a ELA.
Recursos da plataforma:
- Rastreamento de sintomas e tratamentos: os pacientes podem inserir dados sobre seus sintomas, medicamentos, efeitos colaterais e outros tratamentos.
- Fóruns de condições específicas: permitem que os pacientes discutam suas experiências, façam perguntas e ofereçam suporte a outras pessoas.
- Oportunidades de pesquisa: os pacientes podem optar por participar de estudos de pesquisa com base nos dados que fornecem.
- Relatórios de tratamento e sintomas: os dados agregados são usados para produzir relatórios que podem informar outros pacientes sobre a eficácia e os efeitos colaterais de tratamentos específicos. Esses dados ajudam a entender melhor as doenças, melhorar os tratamentos e focar no que os pacientes realmente precisam.
Privacidade: embora a plataforma seja sobre compartilhamento de dados, a privacidade é uma preocupação central. Os pacientes podem escolher quanto querem compartilhar e com quem.
Impacto: A plataforma cresceu substancialmente desde a sua criação, com membros representando mais de 2.800 condições. Tem sido fundamental na produção de vários estudos de pesquisa. Por exemplo, em 2011, os dados de PatientsLikeMe foram cruciais em um estudo que desmascara a alegada eficácia do carbonato de lítio no tratamento da ELA.
Monetização e parceria: a empresa formou parcerias com empresas farmacêuticas, oferecendo acesso aos seus dados (enquanto protege a privacidade individual) por uma taxa. Esse modelo de negócios gerou debates sobre ética de dados, mas a empresa afirma que é essencial para manter uma plataforma gratuita para seus usuários e impulsionar as pesquisas.
A ideia por trás do PatientsLikeMe é a crença de que, quando os pacientes compartilham dados do mundo real, a colaboração em escala global se torna possível e melhores resultados podem ser alcançados para todos. Ao longo dos anos, tornou-se uma ferramenta significativa para muitos pacientes em todo o mundo, fornecendo-lhes informações e suporte comunitário que podem não estar prontamente disponíveis em outros lugares.

Mais informações em: https://www.patientslikeme.com/
https://www.youtube.com/watch?v=ln6p4I6qPB4

Esta solução não deverá mencionar o uso de drogas, químicas ou biológicas (incluíndo alimentos); dispositivos invasivos; conteúdo ofensivo, comercial ou inerentemente perigoso. Esta solução não foi validada medicamente. Prosseguir com atenção! Em caso de dúvidas, por favor consulte um profissional de saúde.

Isenção de responsabilidade: Esta solução foi escrita por alguém que não é o autor da solução, portanto, pedimos esteja ciente de que, embora tenha sido escrita com o maior respeito pela inovação e pelo inovador, pode haver algumas declarações incorretas. Se encontrar algum erro, entre em contacto com a equipa do Patient Innovation via info@patient-innovation.com

Sobre o autor

Quando Stephen Heywood foi diagnosticado com ELA em 1998, aos 29 anos, seus irmãos Jamie e Ben começaram a trabalhar, tentando de tudo para retardar a progressão da doença de Stephen. Eles se tornaram cientistas cidadãos, aproveitando o poder de toda e qualquer informação que pudessem encontrar. Foi uma abordagem de tentativa e erro. Algo estava faltando e eles sabiam que tinha que haver uma maneira melhor. Então, eles lançaram o PatientsLikeMe (PLM) para conectar pacientes com ELA em 2005. Ele se expandiu rapidamente e, desde 2011, recebemos pessoas com qualquer condição de saúde para se conectar com colegas, aprender juntos e assumir o controle.

Categorias associadas a esta solução

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    [7892] => 1
    [8787] => 1
)
Gostar da solução
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