69 posts in the category “Media Coverage”

“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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The 2017 healthcare policy roller coaster ride — and what’s around the bend

Posted December 15th, 2017 by

It’s been a year of wild ups and downs related to the proposed U.S. healthcare policy changes and unknowns around the Affordable Care Act (ACA or “Obamacare”), Medicare and CHIP (an insurance program for kids). See a legislative recap and what could be next.

2017 ACA repeal efforts recap

Having trouble keeping track of what happened this year? You’re not alone. Check out this timeline.

In the spring, we shared the results of a May 2017 PatientsLikeMe healthcare poll, which found that nearly 3,000 participants are largely aligned about components of a strong plan for the country. Right when we announced the poll results in mid-June, the Republican majority in Congress was trying to pass the American Health Care Act (AHCA), which would’ve repealed most of the ACA/“Obamacare.” PatientsLikeMe members shared our poll results – showing the largely united patient voice – along with their personal views in messages to their members of Congress through this Take Action page.

Over the summer, the ACA repeal efforts failed to gain enough support in the Senate, despite a few different attempts (including the Better Care Reconciliation Act, and the so-called “repeal only” and “skinny repeal” bills – see a legislation refresher here).

This fall, Congress turned its attention to tax reform (but has lumped in healthcare changes with less fanfare). In early December, the Senate passed a tax bill called the Tax Cuts and Jobs Act that could repeal the individual mandate of the ACA (the part of the healthcare law requiring that all Americans have health insurance).

The nonpartisan Congressional Budget Office projects that without the mandate, the number of uninsured Americans would jump by 4 million in 2019, on up to 13 million by 2027. Some view the healthcare changes in the tax bill as an attempt at the “skinny repeal” all over again and say that without the mandate, the ACA/Obamacare is at risk of collapse unless Congress takes action to “prop up” the health insurance markets.

Now what? The tax bill is not yet final – now the House and Senate are hashing out differences in their versions of the legislation. Many members of Congress in the Republican majority appear to support the repeal of the individual mandate (one of the least popular parts of the ACA). But most Democrats and several vocal groups like the AARP oppose the tax bill and the possible healthcare fallout.

The estimated $1.5 trillion U.S. deficit increase over the next decade and beyond will “inevitably lead to calls for greater spending cuts, which are likely to include dramatic cuts to Medicare, Medicaid, and other important programs serving older Americans,” AARP says, noting that the tax bill would lead to $136 billion in federal funding cuts in fiscal year 2018, $25 billion of which must come from Medicare. “Such sweeping cuts would be detrimental to an already vulnerable population,” AARP says.

CHIP and VA healthcare programs

Two other pieces in the U.S. healthcare puzzle are also facing risks or changes, but they’ve gotten a lot less news coverage.

The Children’s Health Insurance Program (CHIP) provides low-cost health coverage to kids in families that earn too much money to qualify for Medicaid. In the past, the program had bipartisan support in both the House and Senate, but Congress let federal funding for CHIP expire in September and now states are scrambling to sort out a backup plan for the 9 million children enrolled.

The Kaiser Family Foundation made a map illustrating when states could run out of CHIP funding, with 16 states projected to exhaust their funds by the end of January 2018. They say that children in CHIP may be enrolled in Medicaid, which means states will pay more because the federal match rate for Medicaid is lower than it is for CHIP.

The Veterans Affairs (VA) Choice program could also be in limbo if Congress doesn’t act soon to approve emergency funding to the ailing program, which would expand access to care at non-VA facilities in some cases. VA Secretary David Shulkin is reportedly taking steps toward more privatized healthcare for veterans.

What’s your take on U.S. healthcare policy? Join PatientsLikeMe and discuss your views with nearly 30,000 patients who are interested in advocacy. Also, write to your reps in Congress — patient voices matter.

Editor’s note: On December 20, Congress passed the tax bill, including the repeal of the ACA/“Obamacare” individual mandate. The mandate is still in effect for 2018, so those who don’t have health insurance can still face tax fines. The ACA’s private, individual insurance markets will still be around after the mandate goes away in 2019 but could experience “turmoil” because fewer healthy people will be in the markets, as Fortune reports in their article about what the tax bill’s healthcare changes could mean for you.

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