3 posts tagged “Quality of Life survey”

Honoring Family Caregivers Everywhere

Posted November 26th, 2012 by

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November Is National Family Caregivers Month

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

ALS patient Persevering’s CareTeam members (his wife and his sister, respectively) are displayed in the “About Me” section of his profile.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.


Know Thyself. Quantify Thyself.

Posted August 13th, 2012 by

Are you someone who likes to track things about yourself?  For example, do you keep an exercise log of how many reps you did – or a food journal that details what (and how much) you consumed?  Do you monitor your health and disease progression at PatientsLikeMe?

Quantified Self

If so, you might not know it, but you are part of the growing Quantified Self (QS) movement.  Also known as “Body Data” and “Life Hacking,” the QS movement was started by Wired magazine editors Gary Wolf and Kevin Kelly in 2007.  The idea is to increase self knowledge through self tracking.  More specifically, QSers use technology to record data on various aspects of human life, from “inputs” (food, air) to “states” (moods, blood oxygen levels ) to “performance” (mental, physical).

The hub of the movement is http://quantifiedself.com/, an online community where QSers can share their methods and learn from what others are doing.  In addition, QSers get together face-to-face for regular Show&Tell meetings in various cities around the world as well as an annual conference, which takes place this September in Palo Alto, California.  According to the website, the conference is a “working meeting” for users and tool makers looking to collaborate on self-tracking projects and explore the potential effects of self-tracking on society.

Larry Smarr, Founding Director of the California Institute for Telecommunications and Information Technology (Calit2) and Professor of Computer Science and Engineering (CSE) at the University of California at San Diego.  Photo Credit: Grant Delin, The Atlantic.

For many QSers, such as astrophysicist-turned-computer scientist Larry Smarr, self-tracking conveys huge benefits.  According to this fascinating profile in The Atlantic entitled “The Measured Man,” Smarr sees it as a tool for battling obesity, defeating incurable diseases (in his case, Crohn’s disease) and revolutionizing healthcare.  He’s got a good reason, too:  this is a man who monitored his own blood work and detected an inflammatory state in his body long before his first Crohn’s symptom appeared.   While some people feel that with enough data every person could find something wrong with their health, Smarr argues that it’s far better to detect that something’s “beginning to go wrong” and seek “preventative maintenance,” just like you would with an automobile.

It’s a striking analogy.  Could we as human beings extend our lives – just as we extend the lives of our cars – through data tracking and “tune-ups”?  It’s one of the big questions at the heart of the QS movement.  But as far as we’re concerned here at PatientsLikeMe, self knowledge – as well as shared knowledge – is always a good thing.  That’s why we’ve developed tools to help you measure your disease progression (e.g. our Multiple Sclerosis Rating Scale), track how your treatments impact your quality of life, monitor over 200 lab results (e.g. Vitamin D, cholesterol, PSA levels) and record how you are feeling day-to-day (our InstantMe survey).  Better yet, we help you share that data with other patients like you, so that everyone benefits and learns.

What do you think?  Has “quantifying yourself” led to any breakthroughs for you?