Search Results for: sharing

Patient Sharing: A Concept That Is Finally Becoming Obvious

1 Comment / Patient Experiences, Research / By

Susannah Fox, the Associate Director of the Pew Internet & American Life Project, recently posted a blog entry entitled “Peer-to-peer Healthcare: Crazy. Crazy. Crazy. Obvious.” that is near and dear to our hearts here at PatientsLikeMe. In her post, she defines peer-to-peer healthcare as follows: “Patients and caregivers know things — about themselves, about each […]

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Patient Choices: The Shape of Sharing

2 Comments / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend.  Members on our site may choose to share some of this, but what about some of the less

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One for All: A Cross View of Patient Sharing

1 Comment / ALS, Chronic Fatigue Syndrome, Conditions, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, One for All, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series). Today, we continue that theme by taking a look at information being shared across all of our communities that

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Sharing and Learning with PatientsLikeMe

3 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases / By

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions. We also want to thank all of you who have contributed to the 90

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It’s Official: Sharing Health Data Improves Outcomes

4 Comments / ALS, Chronic Fatigue Syndrome, Epilepsy, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Organ Transplants, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct

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Sharing Is A Right As Well

10 Comments / ALS, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV,

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A new gene for ALS: What sharing your genetics could mean for research

15 Comments / ALS, Patient Experiences, Rare Diseases, Research / By

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,

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10 Things You Need to Know About Living With a Mental Illness

Mental Health / By

Going to therapy or talking with friends or family about things like anxiety, depression or PTSD, was once considered taboo. But, mental health has increasingly become a more widely accepted topic of discussion. In 2018, the American Psychological Association found that 87% of American adults agreed that having a mental health disorder is nothing to be ashamed

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