2 posts tagged “Health and Human Services”

“It just makes sense to give back”: How PatientsLikeMe employees volunteered their time this year

Posted 9 months ago by

Volunteering is a big part of the culture at PatientsLikeMe. Inspired by PatientsLikeMe members, who have made our online community a place to find support and answers about health, we do our best to give something back to our local community, too. This year, many of our staff members pitched in and gave their time to organizations all over the greater Boston area. Here’s what we’ve been up to this year…

  • 50 PLMers (that’s what we like to call ourselves) volunteered during PatientsLikeMe’s service month in November
  • Those individuals volunteered a total of 260 hours
  • …and supported 18 different organizations in the greater Boston area

Check out some of the places we volunteered our time this year, and see these PLMers in action…

PatientsLikeMe staff members volunteer at Rosie’s Rosie’s Place

Rosie’s Place is a women’s shelter in Boston that was created to service poor and homeless women. They not only provide shelter, but also support 12,000 women a year with a wide range of services including housing and education.

Tori, Katie, Kim and Rebecca volunteer at Community Servings

Community Servings is a not-for-profit food and nutrition program whose mission is to provide services throughout Massachusetts to individuals and families living with critical and chronic illnesses. They provide home-delivered meals and nutrition services that are medically-tailored to the individuals receiving them, based on their condition. Right now, they deliver to 20 cities and towns across Massachusetts, and are beginning a pilot program in Rhode Island.

Jeremy, George, Jenni and Amber volunteer at Healthcare for the Homeless

Boston Healthcare for the Homeless program supports more than 12,000 homeless men, women and children, and provides access to comprehensive healthcare, from preventive dental care to cancer treatment.

Extending our mission from online to offline

Maria Lowe, Co-chair of the PatientsLikeMe Social and Volunteer Committee, helped organize and coordinate these volunteer efforts in 2017. “I think it’s so important to take time to think about how others around us might not have some of the things we take for granted,” she said. “To me, it just makes sense to give back in whatever ways that I can.” In fostering a culture of volunteerism at PatientsLikeMe, Maria says it fits with our core message. “We’re all about putting patients first and we have our “give something, get something” philosophy, so I think giving back to our local community however we can is just a natural extension of that.”

Here’s to another year of building stronger communities, together.

Interested in becoming a part of the PatientsLikeMe community? Join here.

Share this post on Twitter and help spread the word.


Sharing Is A Right As Well

Posted June 11th, 2009 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, or the impairment that comes from MS, Parkinson’s or ALS, what helps us the most is when those around us reach out and share their support and advice.

You would think that your ability to share would be as much your right as speech, but is it? It’s not clear that is true in healthcare today, nor is it clear that such a right will be protected tomorrow. Privacy is also a right – a right to not share what you do not want shared. It’s a fair and just expectation that the doctors and clinicians you employ to support you in your illness will not share your information without your permission. Today, I fear that privacy has become much more than a right; it has become a goal. When that happens, people begin to find ways to make it difficult to share in the name of privacy.

More than once we have been asked by people in the medical system whether patients are allowed to share information with each other like they do on PatientsLikeMe. In fact, in some countries you can read their rules in a certain way and reasonably deduce that this type of sharing is not allowed. It is vitally important that we do not let this become a reality in the U.S.  There are some that would take away your right to share because they do not believe you are competent to weigh the risks and benefits of sharing, and make a sound decision. Imagine being forced to sign a document before you email a friend on PatientsLikeMe with a question about a symptom? This could be a possible consequence of ill intentioned privacy legislation.

We are working to ensure that sharing is preserved as a right. We know that you share with us, and each other, because you trust that we will do the right thing with that knowledge. At PatientsLikeMe, we are working hard to ensure we earn your trust every step of the way. To do this, we focus our energies on ways to help discover new things about each disease here and support the research system. We do this in the spirit of openness espoused in our Openness Philosophy. We work to be transparent about our business model and our decisions, and try to be accessible to you to answer your questions as you participate in our communities.

It remains our hope that you are wowed like we are about what is possible when we work together to make our healthcare system, and our lives, better. We have seen so much healing between all of you here on PatientsLikeMe, and it is because we are all sharing together – not alone.

PatientsLikeMe was recently asked to testify before the U.S. Department of Health and Human Services National Committee for Vital and Health Statistics (NCVHS). The NCVHS Subcommittee on Privacy, Confidentiality and Security is responsible for exploring these aforementioned issues as they relate to healthcare, and ran a 3-day hearing to spur informative dialogue about the future of e-healthcare. I was honored to represent PatientsLikeMe, and the thousands of patient members of our communities, as I testified on all of our behalf at that hearing.

As I said in the hearing, openness is what is and can help patients. It’s what matters. We believe in the concept called “The Network Patient” – an approach that puts patients first by giving you what you need to know when you need to know it, and empowering you to act on that information. As members of PatientsLikeMe, you have chosen to embrace openness and take control of your health. You volunteer your health information, your experiences, your life – all in an effort to improve your care, support others, and move research forward.

Here are a few excerpts from our prepared testimony statement that expand on privacy, openness and the future of our health system.

picture-13“From our experiences at PatientsLikeMe, we know patients are aware of the issues. They understand and weigh the risks and benefits, and are intelligently making rational choices about where they are comfortable sharing information and how their information will be used to help. If we infringe on this right to share or speak (in the interest of preventing discrimination), we are preventing the flow of information and, by our read, acting contrary to the values on which our country was founded.

Privacy is also more than a legal concept, it is also a philosophical concept. A modern focus on privacy as a goal, not as a right, has moved the line to the point that medicine is slowed, treatments are delayed, and patients die for failure to have what they need when they need it. We have substituted real harm for mostly theoretical harm. We would even argue that the philosophical focus on privacy is a bad thing. We believe that openness is much more powerful concept than privacy in medicine, and one that gives patients the power to take control of their health…

We have to begin to work on building a society that allows the variation in human health and the variation in human condition, one that allows people to be philosophically created equal. We need to work on building a society where information is not used to discriminate, but to assist and support and improve. Restricting the flow of information will not advance solving this problem.

This is not a simple transformation, but we believe it is inevitable. The major privacy issues are not only about health records, but the invisible trail of “breadcrumbs” we leave behind us day to day in life. Health is not a separate concept. It is an integrated concept and, in an integrated world, we have to decide how to build a society that can handle the reality that not all are healthy. We need to work together to get the most productivity and life from all of us.

We believe openness can lead the way to such a society.”

The full testimony is available here and posted to the NCVHS website (along with audio archive of the 5/20/09 hearing). A transcript will also be made available soon. These hearings, and of course our blog, are open to the public for comment on these issues. In the spirit of sharing, please share your thoughts with us here.

PatientsLikeMe member jamie