Website Provides First-Person Data About Health Conditions, Treatments From Patients
The statistics, percentages and probabilities associated with chronic pain and other health conditions can make them seem rather abstract, but there's nothing abstract about living with a chronic condition.
Often, patients seek out support groups and online forums to read stories and get advice from actual people with the same condition.
A website called PatientsLikeMe has been connecting patients for years.
The site is a hybrid of social media and health data collection.
Patients can share detailed information about their experience with a health condition such as symptoms over time and about the treatment options they have tried.
The data collected on the site can be used by the pharmaceutical industry and other treatment providers to improve their services.
PatientsLikeMe has already contributed to over 40 studies with its collected data.
There are currently more than 250,000 patients using the site.
Patients can receive treatment guidance from the published studies as well as patient-reported effectiveness and side effects of various treatments.
Some medical professionals suggest that caution should be taken when interpreting or relying on information from a site like PatientsLikeMe.
The data collected is not high-quality evidence, such as would result from a blinded placebo-controlled trial.
In a blinded placebo-controlled study, either the patient or the patient and the doctor/researcher don't know whether the patient has received the real intervention or placebo.
Therefore the data collected afterward is free of bias and the treatment's efficacy can be assessed against the placebo effect.
Another shortfall of the site is that it doesn't give a randomized selection.
Some people choose to use the site, while others don't.
Some people choose to give certain data but not all data.
Are patients more inclined to report on certain treatments if they work than if they don't? Or is the opposite true? Is the representation equal? How could we know? See http://www.
technologyreview.
com/news/418874/patients-social-network-predicts-drug-outcomes/page/1/ for more on these criticisms.
These are legitimate criticisms and concerns associated with relying on patient-offered data for studies and decision-making.
However,reading first-person accounts of conditions and treatments is valuable to the chronic pain patient.
Also, the data provides a good starting point for designing studies - for example, if a number of patients on the site report a specific side effect associated with a medication, researchers may design a study to test for its presence in a study population, or a developer may begin to reconceive the medication.
PatientsLikeMe is part of a movement toward patient-centered medical care in which the patient, his preferences and the value of his insights are as important as statistics, percentages and probabilities.
By providing a venue for patients to share their experience with health conditions, symptoms and treatments, the site provides a wealth of individualized information for researchers to use in designing and testing different treatment methods.
Learn more at http://news.
patientslikeme.
com/press-release/patientslikeme-launches-data-good-campaign-encourage-health-data-sharing-advance-medic.
Often, patients seek out support groups and online forums to read stories and get advice from actual people with the same condition.
A website called PatientsLikeMe has been connecting patients for years.
The site is a hybrid of social media and health data collection.
Patients can share detailed information about their experience with a health condition such as symptoms over time and about the treatment options they have tried.
The data collected on the site can be used by the pharmaceutical industry and other treatment providers to improve their services.
PatientsLikeMe has already contributed to over 40 studies with its collected data.
There are currently more than 250,000 patients using the site.
Patients can receive treatment guidance from the published studies as well as patient-reported effectiveness and side effects of various treatments.
Some medical professionals suggest that caution should be taken when interpreting or relying on information from a site like PatientsLikeMe.
The data collected is not high-quality evidence, such as would result from a blinded placebo-controlled trial.
In a blinded placebo-controlled study, either the patient or the patient and the doctor/researcher don't know whether the patient has received the real intervention or placebo.
Therefore the data collected afterward is free of bias and the treatment's efficacy can be assessed against the placebo effect.
Another shortfall of the site is that it doesn't give a randomized selection.
Some people choose to use the site, while others don't.
Some people choose to give certain data but not all data.
Are patients more inclined to report on certain treatments if they work than if they don't? Or is the opposite true? Is the representation equal? How could we know? See http://www.
technologyreview.
com/news/418874/patients-social-network-predicts-drug-outcomes/page/1/ for more on these criticisms.
These are legitimate criticisms and concerns associated with relying on patient-offered data for studies and decision-making.
However,reading first-person accounts of conditions and treatments is valuable to the chronic pain patient.
Also, the data provides a good starting point for designing studies - for example, if a number of patients on the site report a specific side effect associated with a medication, researchers may design a study to test for its presence in a study population, or a developer may begin to reconceive the medication.
PatientsLikeMe is part of a movement toward patient-centered medical care in which the patient, his preferences and the value of his insights are as important as statistics, percentages and probabilities.
By providing a venue for patients to share their experience with health conditions, symptoms and treatments, the site provides a wealth of individualized information for researchers to use in designing and testing different treatment methods.
Learn more at http://news.
patientslikeme.
com/press-release/patientslikeme-launches-data-good-campaign-encourage-health-data-sharing-advance-medic.
