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About the solution
The concept for PatientsLikeMe was birthed from the personal experiences of its co-founders, the Heywood family. One of the brothers, Stephen Heywood, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in 1999. The Heywoods, including Stephen's brothers Benjamin and James, sought out the best treatments and potential cures for Stephen. They recognized the value of shared patient data and insights in addressing conditions like ALS.
Platform Features:
- Symptom and Treatment Tracking: Patients can input data about their symptoms, medications, side effects, and other treatments.
- Condition-specific forums: These allow patients to discuss their experiences, ask questions, and offer support to others.
- Research Opportunities: Patients can opt to participate in research studies based on the data they provide.
- Treatment and Symptom Reports: Aggregated data is used to produce reports that can inform other patients about the efficacy and side effects of specific treatments.Data-Driven Research: By gathering patient-reported outcomes, PatientsLikeMe provides valuable data to researchers and pharmaceutical companies. This data aids in understanding diseases better, improving treatments, and focusing on what patients really need.
Privacy: Even though the platform is about data sharing, privacy is a core concern. Patients can choose how much they want to share and with whom.
Impact: The platform has grown substantially since its inception, with members representing over 2,800 conditions. It has been instrumental in producing several research studies. For example, in 2011, data from PatientsLikeMe was crucial in a study debunking the claimed efficacy of lithium carbonate in treating ALS.
Monetization and Partnership: The company has formed partnerships with pharmaceutical companies, offering access to its data (while protecting individual privacy) for a fee. This business model has sparked debates about data ethics, but the company maintains that it's essential for maintaining a free platform for its users and driving research forward.
The idea behind PatientsLikeMe is the belief that when patients share real-world data, collaboration on a global scale becomes possible, and better outcomes can be achieved for everyone. Over the years, it has become a significant tool for many patients worldwide, providing them with the information and community support that may not be readily available elsewhere.
More information at: https://www.patientslikeme.com/
https://www.youtube.com/watch?v=ln6p4I6qPB4
这些解决方案不应包括使用药物,化学品或生物制品(包括食品);创伤性设备;冒犯性的,商业或内在危险的内容。该解决方案未经医学验证。请谨慎进行!如果您有任何疑问,请咨询健康专家。
DISCLAIMER: This story was written by someone who is not the author of the solution, therefore please be advised that, although it was written with the utmost respect for the innovation and the innovator, there can be some incorrect statements. If you find any errors please contact the patient Innovation team via info@patient-innovation.com
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Find the ALS clinical trial that's right for you with ease and confidence.
CAREGIVING
Amyotrophic Lateral Sclerosis
Website
Promoting self-management
Building Supportive Community Relationships
Promoting inclusivity and social integration
Preventing (Vaccination, Protection, Falls, Research/Mapping)
Raise awareness
Caregiving Support
Clinical Pathology
Clinical Pharmacology
General and Family Medicine
Internal Medicine
Medical Genetics
Neurology
Orthopedics
Physical Medicine and Rehabilitation
Rheumatology
United States
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Teacher Alex Truesdell is Transforming Lives: Adaptive Design Association Revolutionizes Disability Solutions
CAREGIVING
Drawing
Painting
Playing
BODY BALANCE: Maintaining body balance
(SELF)-CARE: DRINKING: Drinking independently.
(SELF)-CARE: EATING: Eating independently.
MOVING IN A WHEELCHAIR: Moving using a wheelchair.
Playing an instrument
Studying
Blindness
Hand Deformity
Neuromuscular Disorders
Assistive Daily Life Device (to help ADL)
Walking Aid (wheelchair/walker/crutches)
Restoring mobility
Replacing lost limbs
Enhancing health literacy
Promoting self-management
Promoting inclusivity and social integration
To improve Treatment/Therapy
Preventing (Vaccination, Protection, Falls, Research/Mapping)
Raise awareness
Caregiving Support
General and Family Medicine
Internal Medicine
Orthopedics
Pediatrics
Physical Medicine and Rehabilitation
United States
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Cláudia Arantes, a palliative care doctor, created the Casa do Cuidar platform that cares for patients facing terminal illnesses.
CAREGIVING
Social interaction
Blood Pressure Disorders
Website
In Person service
Online service
Book/Comic
Managing pain
Enhancing health literacy
Promoting self-management
Building Supportive Community Relationships
Promoting inclusivity and social integration
Enhancing Mental Health
Preventing (Vaccination, Protection, Falls, Research/Mapping)
Raise awareness
Caregiving Support
Child and Adolescent Psychiatry
Dermatology
General and Family Medicine
Internal Medicine
Medical Oncology
Pediatrics
Psychiatry
Vascular Surgery
Brazil
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