2 posts tagged “sharing health information online”

“You’re the only expert of your own life and your own body.” Author Nilofer Merchant shares why she featured PatientsLikeMe in her new book

Posted March 1st, 2018 by

“Onlyness. It’s not a word in the English dictionary, but it should be.” We sat down with author, TED Talk speaker and innovator Nilofer Merchant to talk about her new book The Power of Onlyness, and the role that the PatientsLikeMe story plays in it.

Advocating for “Onlyness”

Nilofer has been championing the idea of “Onlyness” since 2012, when she first introduced the term in her Harvard Business Review-published book 11 Rules for Creating Value in the Social Era. “Onlyness” is the idea that “each of us, every single one of us can add value in the world. Not just the credentialed people, not just the educated people, but each and every single one of us.

“The young, the sick, the neglected – these are not typically the people whose ideas are heard.” She says. “Most often, whether ideas are considered or dismissed is based on who contributes them, and how powerful their sponsors – not the ideas themselves – are.”

Raising a collective voice

Nilofer studied over 300 examples of companies bringing “Onlyness” to the forefront and chose 20 to feature in her book, including PatientsLikeMe.

“PatientsLikeMe is allowing the levers and power systems to benefit the user,” she says. “It’s also letting users actually say ‘here’s my experience with this medicine’ which is an incredibly empowering thing. It lets us compare notes, it lets us not feel alone, we start to ask better questions, we can help each other. So of course it’s going to change the healthcare system because in the past the doctor was the expert, but you’re the only expert of your own life and your own body.”

The book dives into how current systems, from healthcare to business and more, are set up in a way that keep the “experts” in charge. Nilofer, however, explores and reveals the power of what she refers to as a “distributed network” where each of us can gather around a shared purpose, and, by connecting our shared will, become powerful enough to make change happen.

Turning up the volume

In the book, Nilofer shares the story of Ed Sikov, a PatientsLikeMe member living with Parkinson’s disease. Ed visits PatientsLikeMe every day, as he explains, because it can “help the next guy.” By sharing about his treatments, symptoms, side effects and more, he’s joining a powerful collective voice that demands to be heard.

“When I share information, I help others,” says Ed in the book. “It might become clear that one treatment works better for people my age, or that simple shift of when I take a drug changes how I respond. Sharing my own data lets all of us have more insight.”

Harnessing your “Onlyness”

Nilofer says she wrote this book “to try to talk to how much we screen people out based on titles, based on packaging…and we do it to ourselves, too. 61% of us tell ourselves that our own opinions and ideas don’t count. We negate ourselves instead of celebrating that thing only we can bring. We end up seeing ourselves through the boxes that other people see us in.”

So how can you own your “Onlyness”? “It’s about claiming your own life story as relevant,” Nilofer says. “The first step of claiming “Onlyness” is to claim that spot in the world where only you stand. It’s to accept, and celebrate and embrace all of it, whatever it looks like, even if it doesn’t look like conventional thinking. That’s how really new ideas come to bear.”

You can find out more about The Power of Onlyness and Nilofer Merchant on her website, nilofermerchant.com.

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Should You Share Your Health Information Online?

Posted October 24th, 2008 by

Openness.  Privacy.  These philosophies stand in direct opposition in the question of which is better for consumer health.  Should people be open with their health information or private?  Certainly there are times for both, right?


Not according to some privacy advocates.  On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited a survey on their blog entitled “National Dialogue on Health Information Technology and Privacy” that 67% of respondents were either “somewhat” or “very concerned” about the privacy of their personal medical records.  A glass half-full perspective would say that one-third of respondents think openness is appropriate, at least somewhat.  McGraw summed up the post this way:

Without appropriate protections for privacy and security in the healthcare system, patients will withhold information from the health care providers – or decide not to seek treatment – because of fears about how their personal health information could be misused. Ignoring concerns about privacy – or inadequately address[ing] them – will significantly threaten public trust in these new e-health technologies, and in our overall healthcare system.

It may be a stretch to say make a blanket statement that patients will decide not to seek treatment based on fears about how their information would be used.  Let’s hear from patients themselves.  We asked members of our Multiple Sclerosis community to respond to this statement in our forum.  Here are excerpts from some of their responses:

1. I would withhold info or not seek care due to privacy concerns.  I was thrown into MS and was very forthcoming with everyone, including my former employer.  If I had to do it all over again, I would keep my mouth shut, with the exception of telling my family.  I like the anonymous nature of PLM.  I don’t include my full name so I’m comfortable in noting my dx and symptoms.

2. unfortunately, there really isn’t enough privacy anymore. I just figure to heck with it. If they really want my info they’ll find a way to get it anyways.

3. I believe the benefits of participating in a health care system using online records outweigh privacy concerns. What privacy? Given the resources, anyone can find out anything about my background.

4. Like many, I have mixed feelings about this.  Working in healthcare, I know that there is a HUGE advantage to having all your medical info readily available to any provider.  I can think of many times where I’ve had a patient who couldn’t tell me their history, or what meds they’re taking, and struggling to figure out what was going on.  On the other hand, I also know, from personal experience, that having unauthorized people get access to your health info can have major negative consequences.

5. That [online medical records is] inevitable is probable,but I still believe that we should have the right to say who knows what,when,and if about ourselves.Its about freedom of choice,will and about human dignity!

6. My medical records are open, wanna see? Just look at PLM!!!!!

What a popular question!  We got dozens of responses in less then 24 hours.  What we found is that the one-in-three ratio holds.  Of our patient member responses, two out of three have either not sought treatment or wouldn’t seek treatment because of privacy concerns.  The other third believes that privacy doesn’t exist or doesn’t help people.  Although anecdotal, this is quite a finding and reflects what we believe to be the true nature of this debate:  There are times for openness and times for privacy.  Patients simply want control over when each is employed.

Do we ultimately know that sharing health information online is “safe”?  We answer that question in one of our FAQs, but the short answer is we don’t know.  Yes, there are risks that information will be misused.  But what we also know is that there is a benefit/risk equation for people and their health.  And when research is slow and treatment options are scarce, patients turn to each other for help and support.  They can’t wait 10 years or more for traditional clinical research.  Sharing becomes the best option.  The internet then becomes the most powerful medium to share information, identify new best practices, and ultimately create new medical evidence.

Our Openness Philosophy discusses how sharing health information is actually a way to democratize health data for the benefit of all stakeholders, patients, physicians, researchers, caregivers, and industry as well.  We can’t answer the question for you posed in the title.  Only you can decide if sharing health information online is for you.  We just want to give you the opportunity if and when you’re ready.

We would love to hear what you think!  Continue the conversation by leaving us a comment.

PatientsLikeMe member dwilliams