Building the Writing Muscle

This past weekend in Washington, D.C. for MDA Hill Day, I had the pleasure of meeting and speaking with Ira Walker.  In addition to being an MDA National Ambassador and an entertaining speaker, he also recently published a novel: Torn Branches. 

I asked him about his experience writing a novel and how he did it. Nothing in his background pointed to somebody who I would expect to write and publish a large work of fiction.

He said to me what I've heard several other writers tell me in the past. He said you have to practice. Write for an hour and half every day, he said, and then the writing muscle will grow strong and you'll one day find that you can write a book.

My partner recently wrote a book. Not a novel, but a technical manual: Getting Started With Grafana. I asked him what he thought about Ira's advice. He said that the "write every day" approach would never work for him. However, he's always been very talented with language and explaining complex topics. He's also good at letting deadlines put a fire under his butt. Apparently the publisher was very surprised by how well he met his deadlines, and this is not a typical approach. He said the "write every day" approach sounded like it would work for me temperamentally.

During the COVID era, when I was running Quaranteam, part of what we were offering was a weekly newsletter to our members. Weekly was a bit aspirational. Writing these was challenging - I was sending them on an email distro list to 250 of my friends and friends of friends, what will I say wrong this time? I got thoughtful feedback from one of my Admins when I shared this struggle. She's a counselor, and also has a master's degree in creative writing from Emerson, so I valued her feedback.

She told me that she thought I was struggling because my newsletters were always written from the heart.

To give you an example from September 2020:

We might feel overwhelmed.  We might feel isolated.  But we are together.  We might not see the impact of our work from where we stand now, but it is vital for the future that we are building together.  Like it or not, we are living through history right now.  We are at a critical juncture to shape the world for decades to come, even though we might never have the perspective to fully appreciate the trails we are blazing or understand how they all intertwine together.

Wow, listen to me go! Somebody get me a pulpit! No wonder I found writing these draining, I was always shooting the moon. Wish me luck, maybe I can learn how to deliver consistency.

eAPTCs Helping People Living with Disabilities

This past week I had the opportunity to visit my lawmakers on Capitol Hill in DC with the Muscular Dystrophy Association (MDA). At this MDA Hill Day event, people from 26 states met with their lawmakers and advocated for issues important to people living with neuromuscular disease (NMD) and their loved ones.

Specifically, we were asking our lawmakers to protect enhanced ACA premium tax credits (eAPTCs), support NIH funding, and cosponsor the Alleviating Barriers for Caregivers (ABC) Act. I found it interesting that the MDA had opted to include eAPTCs as an issue to advocate for - do people living with NMD even use these?

ATPCs are the mechanism by which the ACA makes premiums for health insurance policies purchased on health insurance exchanges affordable. They work by comparing your household income to the price of a benchmark plan available on the exchange. The benchmark plan is the second least expensive silver tier plan available in your zip code. Households are then given tax credits in the amount which would make this benchmark plan mathematically "affordable," and these credits can then be applied towards any plan on the exchange. Since their implementation under the ACA in 2014, households earning less than 400% of the FPL ($60,240/year for a family of one in 2025) have received this form of premium assistance on a sliding scale.

Enhanced ATPCs were introduced in the American Rescue Plan Act (ARPA) of 2021 in response to the continuing COVID pandemic and were later extended through 2025 in the Inflation Reduction Act of 2022. eAPTCs opened premium assistance to higher income families that had previously been excluded from any financial assistance when purchasing private health insurance policies through the exchange. With eATPCs, households do not need to pay any more than 8.5% of their total household income towards the benchmark plan. This applies to all households earning more than 400% FPL (with a handful of other eligibility criteria, such as approved immigration status).

With 2025 coming to a close, eAPTCs are at risk of ending. For over a month now, the federal government has been shut down because the majority party (Republicans) in both the House of Representatives and Senate are refusing to include these tax benefits for middle class households in the stalled funding bill.

But back to the MDA. NMDs are progressive diseases characterized by muscle weakness and loss of function. People living with childhood onset NMDs typically qualify for automatic Medicaid eligibility through the SSI program. People living with adult onset NMDs are able to qualify for Medicare coverage 24 months after the social security administration (SSA) deems them "disabled." With SSI Medicaid and Medicare available, why do eAPTCs matter to people living with NMD?

I found a resounding answer when I spoke with a married couple from Illinois at MDA Hill Day. She has ALS (Amyotrophic Lateral Sclerosis) and he takes good care of her.

Considering how rapidly ALS can progress, it is one of only two diagnoses which allow people to skip the 24 month wait for Medicare eligibility (the other being end stage renal disease (ESRD)). I asked this couple if their experience matched this - how immediate was her Medicare coverage in practice?

"She doesn't qualify for Medicare," was his response. 

"What?" I said, "Oh no! Does she not have the 40 quarters of work history she would need to qualify?"

"Bingo," he said, "And in order to qualify for Medicare spouse benefits under my own work history, she needs to be 62. She's 58."

"Oh no," I said. "And at your ages and at this point in your career, I'm sure you have too much in assets to qualify for Medicaid through SSI..." (a married person with a disability cannot qualify for SSI Medicaid if the couple has more than $3,000 between them). "How do you get her health insurance?"

"We get her health insurance through the exchange," he said. "We're using the enhanced tax credits this year, and her health insurance is $600 a month. Next year, if they're not renewed, we'll be paying $1,400 a month." 

Their story really hammered home for me how important it is for everybody to have access to affordable health coverage. I had been thinking of people like myself - comfortable Americans without children who really just need health insurance as a safety net in case of catastrophe. I want high-quality affordable health coverage to be consistently available to me and my peers. However the political narrative likes to malign people in my situation - my asking for assistance is literally the same as stealing the food out of the mouths of some Dickensian child strawmen, or so they try to tell us.

eAPTCs help everybody. By extending tax credits to middle and upper income families which make health insurance premiums affordable, the system benefits. More people in the risk pool means more predictable annual costs. Proactive preventive health care that people can afford leads to fewer ER visits and better long-term health and system cost outcomes. And finally, relaxing APTC eligibility requirements for everybody creates a safety net, and it means that people who really need regular care won't lose access to affordable coverage if they fall through the cracks of other programs.

Working as a Family Man in Florida

Last week, I was traveling through Florida on vacation (I know, I know, I was sure to cover my luggage in Pride stickers first). My companion and I were taking a taxi to a hotel, and the driver mistakenly took us to the wrong Marriott. No big deal - there were like a dozen Marriott's in the city and the right one was less than ten minutes away.

The driver apologized and said he had a lot on his mind. He told us that his wife had been fighting stomach cancer for a year, and he was expecting the call from the hospital at any moment that she had passed. He talked about how her face had changed completely during her illness. He said they had three children between the ages of 8 and 15.

I don't think he was meaning to give us a sob story. Up until this point he was playing Christian music on the radio, turned up loud enough to avoid talking with us.

So why on earth was this man driving us around in his taxi? He should instead be with his dying wife. He should instead be with his children. He should instead be at church on this sunny Sunday morning finding support through his faith and his community.

He didn't say as much, but I think he was driving his taxi to keep his family's household income high enough to qualify for subsidized health insurance through healthcare.gov.  If his income ever fell below 100% of the federal poverty level ($37,650/year for a family of five), he would lose access to all assistance and his monthly health insurance premiums would skyrocket. He was working so he could pay for his wife's medical care.  

In most other states, this would not be an issue. In most other states, if his income was below 138% of the federal poverty level ($51,957/year for a family of five), his entire family would qualify for free healthcare under the Medicaid program. Unfortunately, Florida and nine other states have made the political decision to refuse federal dollars to provide free health coverage to their lowest income residents. So, ironically, if he's poor enough, he gets generous federal funding in the form of ACA premium tax credits and cost sharing reductions (CSRs).  But if he's too poor, he gets nothing.

I don't know all of the details here. His kids probably qualify for CHIP health coverage through the state. Maybe he and his wife can qualify for Medicaid due to being caretakers of children under 18 (several non-expansion states have something like this). But wouldn't it be easier and more humane to provide coverage to low-income families with less administrative overhead?

If he lived in a different state, he and his family might qualify for free healthcare through Medicaid (even if he still chose to work some). He might be eligible for paid family medical leave (PFML) to care for his wife, even as an independent taxi driver (e.g. MA). His wife might qualify for special programs to provide extra financial assistance to people diagnosed with cancer (e.g. CT).

I'm making up a lot of details about a person who I barely met. But it breaks my heart that we have a nation of haves and have-nots based on the compassion or cruelty of state lawmakers.

Quaranteam: A Meta-Analysis

I must say that the inaugural Quaranteam has been a resounding success. While I might have already mentioned that the Boston Polyamorous Community is an exceptional group of people who have a lot of practice at negotiating boundaries and being community-minded, we are also smart, creative, and a lot of fun!

Delightful things that have surprised me

Opening up a Boston Poly Community Quaranteam (BPC QT) Slack and cautiously nurturing and moderating it through its development has led to so many delightful things beyond Quaranteam’s original vision of Helpers helping Helpees with Captains to coordinate.

• Slack Members have created and moderated their own amazing channels, such as #surprise-squad, where BPC QT Members anonymously drop off surprises at each other’s houses (with privacy explicitly protected!).

• Countless group activities have been coordinated on the platform ranging from Zoom tea parties, to movie nights, to remote beer tastings (with curated beers delivered to the homes of all attendees!).

• The incredible Admin team has brought diverse strengths to building a culture of positivity in the Slack. Sometimes this is formal (e.g. authoring Slack Etiquette Guidelines), sometimes this is structural (e.g. engaging the community and taking the time to plan before launching new Slack channels), and sometimes this is active (keeping an eye on heated discussions and jumping in with a gentle hand when appropriate).
  
  

Bumps in the road

However, it’s not been all puppies and rainbows. Considering the safe environment and culture of sharing which we’ve built in the BPC QT Slack, growing pains can be hard and emotions can be huge (especially these days). Trust isn’t something that happens by accident, and new members can be scary. Keeping the Slack culture healthy and vibrant takes a lot of conscious work.

And beyond interpersonal considerations, other weird snags can come up. Did you know that McAfee briefly categorized quaranteam.net as a malicious website, scaring off new members?  Props again to the diverse skills set of our Admin team – we were able to petition McAfee to change their records and stop talking trash about us within a week. You know, if it was just me running Quaranteam, I would have had to fix this by abandoning quaranteam.net entirely and then moving everything over to a whole new website… having people who know things that I don’t in leadership positions sure is helpful!

Goals and ambitions going forward

While the BPC QT is a lively and rewarding handful that takes up plenty of time, the Quaranteam leadership team (the Admins plus a few allies) is always on the lookout for what’s next down the road. This has led to wonderful innovations (e.g. social justice Slack channels, oh and also *the entire Slack*), but we look beyond the BPC QT too. 

One recurring theme since day one has been figuring out how to build more Quaranteams for other already-established communities. Another has been how to give a professional boost to the Admins and other community members who are generously donating their time – this is a volunteer labor of love, and we’re all bringing our professional A-games to the table.

We’ve done several things to promote these dual objectives that many people might not know about:

• We launched a Quaranteam LinkedIn page. Take a look and consider following us!

• We’ve had some initial conversations with startup services companies. For example, we had two calls with KiwiTech about potentially co-developing a more robust software platform. We’re not partnering with them at this time, but discussing the QT vision and platform with them was incredibly constructive.

• Quaranteam applied to the Emergency Response for the General Public Innovation Challenge, sponsored by the Robert Wood Johnson Foundation last month. Check out our pitch deck! Here’s hoping we make it to round two!

• We’ve been strategizing about how to be written up in the press for several weeks now, and I think we’re about to hit traction with a local newspaper!

• Quaranteam is putting together application materials for the TechStars Startup Accelerator. Getting in would be an honor and an amazing experience and bring invaluable mentorship as well as funding opportunities. This is a pivot from our earlier ideas about registering as a 501(c)(3) or a 501(c)(4) nonprofit, but we’re still not selling user data and privacy will always be upheld as a core value.

Quaranteam has been a weird ride. It doesn’t look at all like I thought it would when I set out to build it four months ago – it’s so much better. To be honest, I had thought that Quaranteam would be petering out about now due to a robust public health response to the COVID-19 pandemic, but here we all still are. The Quaranteam structure that we’ve put in place will serve us well as we continue to brave this march together.

COVID-19 Beach Safety

With the summer in full swing and the pending holiday weekend, I wanted to share a few guidelines from the CDC about how to visit the beach responsibly in the age of COVID-19.  Use this list as a starting point to keeping yourself and others healthy and safe.

Remember, the virus that causes COVID-19 is thought to spread mostly person to person, by respiratory droplets released when an infected person talks, coughs, or sneezes. Another person can become infected if the droplets land in his or her mouth or nose and possibly if the droplets are inhaled into the lungs. The virus might also spread to hands from a contaminated surface and then to the nose, mouth, or possibly eyes. Infected people can spread the virus whether or not they have symptoms.  Evidence suggests that COVID-19 cannot be spread to humans through most recreational water.

Fortunately, there are several actions you can take to help lower the risk of transmission of the virus at the beach.




Stay home if you might be sick.  First and foremost, stay home if you have symptoms of COVID-19, have been diagnosed with COVID-19, or are waiting for COVID-19 test results.  If you have been in close contact with someone with COVID-19 within the last 14 days, stay home and monitor your health. 




Practice Social Distancing.  Visit beaches close to your home so you are less likely to need to stop along the way while traveling. Carpool or vanpool only with people in your own household.  Stay at least six feet away from people who you don’t live with, on shore and in the water.  Avoid crowded swim areas and beaches where distancing might not be possible.  Lifeguards on duty will still rescue distressed swimmers, provide first aid, or perform cardiopulmonary resuscitation (CPR) when necessary.




Use Cloth Face Coverings.  As you know, cloth face coverings are meant to protect other people in case you are unknowingly infected and do not have symptoms.  It’s most important to wear them when social distancing is difficult.  Plus, they can help protect your face from harmful UV rays.  The CDC advises that you do not wear them in the water, because they can be difficult to breathe through when they’re wet (making it particularly important to maintain social distancing in the water).  Bring some spares, in case any get wet.  Children younger than two years old should not wear cloth face coverings, nor should other people who are unable to remove the cover without assistance.




Hand Hygiene. Take advantage of any portable handwashing stations and periodically wash your hands with soap and water for at least 20 seconds.  If soap and water are not readily available, adults and older children who can safely use hand sanitizer should use one that contains at least 60% alcohol.  But watch out - hand sanitizers might not be as effective when hands are visibly dirty or greasy, so wiping sand or sunscreen off before application might be helpful. Reapply sunscreen after hands are dry.




Beach Toys and Gear.  Bring enough for everyone.  Items that are difficult to clean, sanitize, or disinfect or that are meant to come in contact with the face (such as goggles, nose clips, and snorkels) should not be shared.  Don’t share food, equipment, toys, and supplies with people who you don’t live with.




Follow Beach Safety Rules and Guidelines.  Finally, listen to local health officials, beach managers, lifeguards, and staff and comply with all beach safety guidelines (COVID-19 and otherwise).  Review any posted signs and listen to any announcements broadcast by PA or megaphone.  Contact the beach in advance of your visit to make sure they are open and ask what steps they are taking to prevent the spread of the virus.  If you need more information, ask to be put in contact with the beach staff member responsible for responding to COVID-19 concerns. 

Source: https://www.cdc.gov/coronavirus/2019-ncov/community/parks-rec/public-beaches.html

With a little forethought and planning, you can do your part to help reduce the spread of COVID-19 and flatten the curve.  Stay safe this summer!

Sources (downloaded July 2, 2020):

https://www.cdc.gov/coronavirus/2019-ncov/community/parks-rec/public-beaches.html

https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/visitors.html

https://www.cdc.gov/coronavirus/2019-ncov/daily-life-coping/beaches-pools.html

Quaranteam - Giving Community Structure to Run Wild

Quaranteam continues to grow and expand!  We’re getting better and better at this as time passes. 

The most notable recent change was the rollout of a Slack workspace.  I’m a closet luddite, and I’ve been resistant to adopting Slack in my life generally.  I don’t really social media, and I prefer using the internet to research information rather than to socialize with friends.  But my two amazing co-admins convinced me it was worth exploring. 

They were right - It has been mind-blowingly successful at building community engagement.

Quaranteam’s core offering is basically a matching service with a project management component.  You fill out a form to become a Helper, and then potentially get matched with a Helpee.  In the meantime, there’s not much to do.  And people who join the platform but who don’t feel up to being a Helper at this point never really get contacted at all, beyond a weekly newsletter. 

Having the Slack as a parallel product offering gives all members a place to go.  Whether or not they actively post messages or participate, they can go in there and see their friends and friends of friends discussing which stores have toilet paper, learning how to care for a yeast starter, sharing pet photos, and exchanging friend codes for Animal Crossing (for example).  We ended up building a few topic-specific channels, but mostly we’re just letting the Slack run wild.  And it is J

The Slack also supports the core offering.  Whenever a new Helpee signs on for two weeks of support, we build them a private Slack channel.  The Captain is then able to invite the whole Helper Squad to one centralized place to coordinate.  The Helpee doesn’t have to do Slack if they don’t want to, but they’re included in the room and encouraged to invite their friends who might not have been signed up to be “official” Helpers.  This has an added bonus of helping to protect the privacy of everyone involved, because no email addresses need to be shared.

All of this said, not everybody is into Slack.  Some Helpers will still need to be wrangled by email, and other Captains and Helpees might prefer to communicate by text message outside of the channel.

This is fine.  Our goal is to create a framework and make tools available.  There’s no need to be proscriptive about how Helpees are helped.  I hope that more Helpees start nominating their own Captains, and I want to make sure the trusted friend or partner who they nominate is able to tap into the Quaranteam machine and benefit from what we’ve built and what we’ve learned.

Quaranteam - Prioritizing Community

The trick with growing a platform like Quaranteam isn’t the technology.  The trick is the community.  Getting people to show up, getting people to engage, getting people to bring their own ideas and imaginations to a shared vision.

I had my own startup back in 2011.  Pico Health.  Health insurance for entrepreneurs and startups back before several of the ACA provisions had rolled out.  My home state of Massachusetts was unusual in that we had an individual mandate as well as a community-rated health insurance exchange for individuals and small businesses.  Pico Health limped along for a while.  I learned a lot, made some friends, and earned maybe $500.  In my post-mortem ruminations about what I could have done better, the number one thing that comes to mind is that I didn’t have a cofounder.  I was doing everything alone.

Before I launched anything with Quaranteam, I read up on how to build a successful community.  I had previously studied community building in 2014 while managing a team of remote contractors at a different startup, and I continued my community-building education while earning my MPH. 

I am delighted to say that, with just a little bit of prioritizing and effort, my smart, talented friends quickly became keys and authors to Quaranteam’s success.  By reaching out to awesome people individually and then working to develop a platform for them to communicate with each other and collaborate without me, Quaranteam is growing beyond my imagination already.  Plus, if you ask individuals for specific help but they’re not able to help, they often then become more engaged individual community members – they feel valued and like they’re a part of something.  Engaged community members are treasures and grow into the roots of any organization or movement.

Quaranteam - Three Forms to Get Started

At its core, Quaranteam is a collection of three Google Forms.

-       Helper Sign-up

-       Helpee Sign-up

-       Join the community Quaranteam

The most important one, in my opinion, is the Helper Sign-Up form.  This is where people can put their names down and think of concrete ways that they might be able to help someone trapped at home in all this mess. This gives people a place to opt-in and write their name down and, even if they’re just filling out a form online, this takes some of the emotional load off of them about what they could be doing to help out during the pandemic.

In the three weeks since launching, there have been some lessons learned.  For example, people’s Helper survey responses get stale fast.  People are signing up, but then taking their families and moving to the country to wait this out.  They might have been willing to do grocery runs when they first signed up, but have since decided that that’s now outside of their risk tolerance.  The Quaranteam Admins have been dedicating a lot of effort to this problem over the past week, and we’re currently experimenting with using a Slack channel.

The Helpee Sign-Up form is a place where people can request community support and services.  This one triggers an immediate email to the Admins so we can start setting them up to get help right away.  The first step is assigning a Captain (ideally, someone who already has a relationship with the Helpee) who will then set up structure to coordinate Helpers and act like a project manager.

One lesson learned so far is that here is where the vision statement matters.  It needs to be clear who this Quaranteam community is, and what we’re offering.  The current vision statement is:

To provide human support to members of the extended Boston Poly Community should they need to self-quarantine or isolate due to COVID-19 virus

Ambiguity can creep in here – I’m an MPH and use the terms self-isolation and self-quarantine precisely (you’re actually sick and don’t want to spread it, or you’ve been in contact with someone known to be sick and you might be contagious but not showing symptoms yet).  However, these terms are getting thrown around a lot lately, and people are commonly using them to include social distancing and/or hunkering down with your household and not going outside (whether or not you’re sick or have been exposed to anything).  Also, something gets lost in the stuffy language of this statement – it’s not crystal clear that this is a platform to ask your friends for help.  If you’re new to the platform, this might look like a business or a social services agency or something.

And last – there’s a Google Form for new members to sign up.  A bunch of thought was put into this one.  The only information we truly need is an email address associated with a Google account so we can manually grant access to the full community Quaranteam site.  We ask for name, but don’t require a real one to sign up just as a Member (the number of pseudonyms used in the extended Boston Poly Community is staggering). 

We also ask how you heard about the site.  There was a lot of discussion put into this question and how rigid to make it.  We’ve built privacy protections into workflows to avoid disclosing to an evil ex that a Helpee is stuck at home (for example).  There is no intention to police the member list, but the admins won’t personally know everybody who joins.  So far, this question has already borne fruit.  When people I didn’t know personally signed up to be Helpees, I knew how to find the right Captains and potential Helpers as a result of who sent them.  Plus, if anything ever goes wrong, I want to be able to follow bread crumbs back to where this person came from and figure out who knows them.

If I had the web development chops, I’d replace this with a more traditional log-in/sign-up workflow into a site that maybe wasn’t a Google Site requiring Google credentials.  Soon.

In this post, I shared a lot of content about how Quaranteam is built.  If you are interested in building one for your own closed community, please shoot me an email at admin@quaranteam.net.  Let’s brainstorm building this together, and your community can have a link on the the main quaranteam.net page. 

Quaranteam - Chronicling the Development of an Idea

On Thursday, March 12, I woke up with an idea.  Coronavirus was beginning to spread in Boston, along with an uptick in fear and anxiety.  The schools hadn’t been closed yet, but events were getting cancelled, social gatherings were turning to virtual, and entire households in my community were hunkering down and all but barricading their doors.

COVID-19 is scary and its mortality rates are sobering.  But most of us will still be here next year.  Human costs take the form of more than just lives lost. 

I belong to a wonderful local community.  Boston has a vast and diverse population of polyamorous people.  The tapestry of community which grows and becomes enriched through consensual non-monogamy is awe-inspiring.  In my experience, Boston poly folk are community-minded, imaginative, and compassionate.  And part of the beauty and richness is that the community expands beyond my knowledge and connections and fades into the unknown – it’s delightful when I get to meet new friends I didn’t know I had yet.

The idea I woke up with was to figure out a way to enable different local poly folk to connect and give support to anyone else in the community who needed to self-isolate (due to illness) or self-quarantine (due to exposure) because of coronavirus.  I saw the nervous energy practically sparking off the screen in social media and group chats.  Everyone wanted to help – wanted to do something.  The incoherent and chaotic messaging coming from our country’s leaders only lead to more fear, more anxiety.  There was no one best place to throw money, labor, and effort to fight the pandemic.  I wanted to create a way for my friends to channel this energy into something good, concrete, and helpful. 

After a week of conferring with people and brainstorming, Quaranteam was born.  This platform (built on Google Sites to launch a minimum viable product quickly), is a way for people to sign up to be Helpers, and know that they will be called upon to help if their friends or friends of friends are trapped in their houses.  And, should anyone catch or be exposed to COVID-19 or have another temporary health condition complicated by all of society shutting down, they can fill out a quick survey and become a Helpee. 

There are a lot of sites like this.  The week leading up to Quaranteam’s launch saw several efforts at using the internet to connect help with the people who needed it.  Several websites cropped up where you could sign up to be a Helper or Helpee (using Quaranteam’s terminiology), but so many of these were just lists. 

Quaranteam differentiates itself from these in two ways:

1.     It is a closed, local community

2.     Captains

There are probably thousands of people who qualify as members of the extended Boston poly community, but it’s still restricted.  This means that people are helping their friends and friends of friends, and we’re building good social juju in the process, partially making up for all of the cancelled parties.  This also helps protect privacy, a big deal for several of the parents and professionals in our community who don’t want to be “outed” by being seen asking for help on this platform.  An insular community design like this would work in many contexts – a church congregation might want to pull together in this situation, but that wouldn’t mean that it’s a good idea to them spread their help thin across all churches everywhere.

Captains are the community members who bring the Helpers and Helpees together.  They work with Helpees to figure out what kind of support they need (a grocery run? virtual company while watching Netflix?) and recruit Helpers to deliver.  If a Helpee is really sick and having trouble, the Captain is also a single point of contact – a Helpee can request a toilet paper delivery without having to wrangle their Helpers themselves.­

Quaranteam has been growing at an amazing clip  and, like any startup, there are pivots and surprises almost daily.  Hold on to your butts!

Fast Healthcare Interoperability Resources (FHIR): An Important Step Towards Interoperability

Background

In today’s modern healthcare delivery landscape, information is power.  With the advent of Big Data, wearable technologies, and precision medicine, people and organizations are collecting and creating health information at an ever increasing rate.  “Convergence of digital health interoperability, wireless sensors, imaging technology and genomics will transform the way that healthcare is practiced, its efficiency and effectiveness” (Benson & Grieve, 2016).  In other words, people are collecting more health data than ever before which can lead to better, and qualitatively different, healthcare.

However, all of the information in the world cannot improve healthcare if it cannot be accessed in a meaningful way by those who need it when they need it.  The Office of the National Coordinator for Health Information Technology (ONC) argues that “there is much work to do to see that every individual and their care providers can get the health information they need in an electronic format when and how they need it to make care convenient and well-coordinated and allow for improvements in overall health” (Office of the National Coordinator for Health Information Technology, 2014).  As we stand now, patients and physicians are not able to consistently or conveniently access relevant health information at the point of care.  And this is not only the case when a patient is visiting a new facility: “even across the systems within an organization, interoperability is often awkward and slow.” (Committee on Engaging the Computer Science Research Community in Health Care Informatics; National Research Council, 2009).  

To address this, we look to interoperability – getting the right information to the right person when they need it, regardless of where or how it is stored.   “Modern healthcare depends on teamwork and communication.  Interoperability is needed to provide information when and where required, facilitate quicker and more soundly based decision making, reduce waste by cutting out repeated work and improve safety with fewer errors” (Benson & Grieve, 2016).   In other words, interoperability gives us hope that through information we can improve the quality of health care while reducing costs.

At its core, interoperability is getting data from one place and putting it in another.  For example, there are several home cholesterol measuring devices on the market.  Some of these can upload your readings to your smartphone using Bluetooth, which allows you to easily track your cholesterol levels over time and empower you, the patient, with information.  You could even share your readings with your doctor to help them better manage your care.  Moving this data from one software platform, such as an app on your phone, to another, such as your electronic medical record (EMR), is the heart of interoperability.

Unfortunately, getting your readings to your doctor might not be as easy as it seems like it should be.  Your doctor probably uses an EMR which is able to store your cholesterol readings in one easy to access place.  But what if your cholesterol tracker only measures your total cholesterol – an amalgam of your HDL, LDL, and triglycerides?  Your doctor’s EMR might only be able to store these values as their individual components – how should your total cholesterol be allocated between the three?  Should your measurements perhaps be recorded in a free text field?  While free text might make a convenient catch-all solution, “using unstructured data limits the use of computer aided applications” (Topaz, et al., 2016).  For example, if a future doctor runs a report on your HDL values, will they think there are no cholesterol measurements available because the HDL fields are empty?  Or, worse, will they make clinical decisions based on inaccurate guesses of what your HDL values were thought to have been?

This brings us to the observation that electronic health information is “not sufficiently standardized to allow seamless interoperability, as it is still inconsistently expressed with vocabulary, structure, and format, thereby limiting the potential uses of the information to improve health and care.” (Office of the National Coordinator for Health Information Technology, 2014).  That is, data stored in one place doesn’t always mean the same thing when stored in another.  For example, the term “cholesterol” might mean different things across different software platforms. The Office of the National Coordinator (ONC) goes on to assert that an important building block on the path to constructing an “interoperable health information infrastructure” is developing “core technical standards” for terminology and vocabulary (Office of the National Coordinator for Health Information Technology, 2014).  If total cholesterol, for example, is defined in a specific and consistent manner across different technology platforms, the information is more portable.  It can move easily and without ambiguity between platforms.

FHIR

Several efforts have been made over the years to introduce an industrywide interoperability standard.  Health Level Seven International (HL7), for example, has developed data standards which are “widely accepted and implemented broadly” (Kasthurirathne, Mamlin, Kumara, Grieve, & Biondich, 2015).  Broad adoption of a standard is an important feature if it is to lead to interoperability – it’s easy to bring information together if people already agree on its structure and format.  HL7 version 2 was released in 1989 and “met with widespread acceptance and adoption,” although it was rough and needed revision, in particular needing a more consistent design (Kasthurirathne, Mamlin, Kumara, Grieve, & Biondich, 2015).  HL7 version 3 attempted to fix this in 2005, but in the process created an complex, overambitious, difficult to use standard (Kasthurirathne, Mamlin, Kumara, Grieve, & Biondich, 2015).  Nothing to date has enabled the uniform seamless transfer of health information that would so greatly benefit health care systems in the United States and worldwide.

In an effort to address these shortcomings and develop a useful and widely-adopted standard, HL7 created the Fresh Look Task Force in 2011 (Mandel, Kreda, Mandl, Kohane, & Ramoni, 2016).  From this emerged the Fast Healthcare Interoperability Resources (FHIR) data standard, created by Grahame Grieve and then transferred to HL7 in March 2012 (Brull, 2013).  “HL7 Fast Healthcare Interoperability Resources (FHIR) is an emerging open standard for the exchange of electronic healthcare information” (Solbrig, et al., 2017).  In other words, FHIR has the potential to become this sorely needed core technical standard identified by the Office of the National Coordinator (ONC).

In FHIR, “the HL7 version 3 standard was totally overhauled, with the developer in mind.” (Marcheschi, 2016).  In other words, FHIR was developed by looking at what third parties had and were making and then building a data standard around that (Grieve, 2017).  “Despite being derived from HL7 version 3 semantic, which has been acknowledged inadequate acceptance (sic) by vendor community, it promises fast implementation by software developers” (Marcheschi, 2016).  FHIR was built by learning from past mistakes and building on past knowledge in order to promote adoption of the standard by software developers and technology companies.

Towards this end, “FHIR aims to reduce implementation complexity without sacrificing information integrity.” (Kasthurirathne, Mamlin, Kumara, Grieve, & Biondich, 2015).  That is, it is a robust standard which is built on high standards of quality, not merely popularity of use.  And, as it is an open standard published by Health Level Seven International (HL7) under a Creative Commons license, anybody is free to use it as part of their personal or commercial software. The FHIR data standard offers us hope of interoperability by creating a robust, open source platform for software developers to create linkages between different information silos.

An important component of linking data stored in different places are pieces of software called Application Programming Interfaces (APIs).  APIs enable data to be transferred from one software platform to another.  Using APIs as a conduit, we can theoretically build vast interoperable software networks empowering doctors and patients with information.  However, if data is not standardized – if it doesn’t mean the same thing in different places – APIs are of limited utility.

FHIR was designed from the ground up with APIs in mind.  Specifically, FHIR has aimed “to follow RESTful principles as much as possible” (Benson & Grieve, 2016).  The RESTful paradigm is “a set of design constraints, methods, and architectures that leads to scalable, reliable, easy to use interfaces” (Benson & Grieve, 2016).  Many popular internet APIs are RESTful, including Google, Twitter, and Facebook (Benson & Grieve, 2016).  FHIR’s embracing of RESTful API practices is just one example of how FHIR was designed keeping software developers and the large-scale exchanging of data in mind.

To illustrate the utility of a FHIR based API, Kasthurirathne et. al. built an API which enabled the movement of data between the Substitutable Medical Apps and Reusable Technology (SMART) Growth Chart App, which used FHIR data standards, and OpenMRS, which did not.  The resulting FHIR API acted as a crosswalk, extracting OpenMRS data and converting it to use FHIR standard data definitions.  SMART Growth Chart App was then able to use this OpenMRS data to build charts tracking a child’s growth.  This successful implementation “highlighted the value of moving towards a domain independent and standards based API that supports interoperability as part of the core OpenMRS architecture and how doing so significantly reduced the time and effort required to support standardized data exchange” (Kasthurirathne, Mamlin, Kumara, Grieve, & Biondich, 2015).  The authors’ conclusions were that replacing OpenMRS’s legacy API with a FHIR API made it easier to construct data exchanges with other software platforms, and that this should be OpenMRS’s first step towards fully adopting FHIR data standards.

Another strength of FHIR is its extensibility.  FHIR can be easily extended because it “defines a collection of ‘resources’ that ‘can easily be assembled into working systems that solve real world clinical and administrative problems at a fraction of the price of existing alternatives.’” (Solbrig, et al., 2017).      In other words, if FHIR does not yet meet their data needs, third party developers can extend FHIR by creating new resources which can be readily integrated into the FHIR corpus.  For example, Hochheiser et. al. wanted to use a FHIR data model to study cancer phenotypes.  Cancer phenotype data resources had not yet been defined in FHIR, but the researchers were able to build “the extension of FHIR resources to model cancer concepts such as tumors, as necessary for the required multi-level representation of cancer phenotypes” (Hochheiser, Castine, Harris, Savova, & Jacobson, 2016).  In other words, the researchers were themselves able to build the cancer phenotype resources that they needed and consequently extended FHIR’s functionality.

Going Forward

FHIR is under active development as a powerful new tool towards achieving interoperability.  However, it is not there yet.  The creator of the original FHIR draft standard and active leader in its ongoing development, Grahame Grieve, estimates that a full electronic health record (EHR) product is still 18 months away (Grieve, 2017).  There are important features not yet in production, such as prescription medication interactions (Grieve, 2017).

The Argonaut Project was launched in 2014 to help address these gaps (Miliard, 2017).  It’s an initiative by private sector companies to “advance industry adoption of modern, open interoperability standards” (Health Level Seven International, 2017).  It aims to “rapidly develop a first-generation FHIR-based API and Core Data Services specification to enable expanded information sharing for electronic health records and other health information technology based on Internet standards and architectural patterns and styles” (Health Level Seven International, 2017).  In other words, healthcare information companies are coming together to promote the FHIR standard towards the industry goal of interoperability.  Industry leading companies are participating in this project including Epic, athenahealth, McKesson, Beth Israel Deaconess Health System, and Boston Children’s Hospital (Miliard, 2017).  Since it is an Open Source standard, any entity can adopt and extend FHIR for private or commercial uses, so long as they remain within the terms of HL7’s copyright.

As the copyright holder, HL7 has an interest in promoting the adoption of FHIR as an industry standard.  Towards this end, they encourage the extension of the standard by third parties to better suit their particular needs, so long as one of two conditions are met.  The first condition allows third parties to opt to share their extensions with HL7 and incorporate them into FHIR standard.  If they choose to do this, they must supply HL7 with “a written release of unrestricted world rights to use a specification as the basis for development of an HL7 Protocol Specification” (HL7 Governance and Operations Manual, 2017), meaning that the extensions will be governed by HL7 copyrights and regulations going forward and ergo be made freely and publicly available as part of FHIR.  Alternatively, If the third party does not opt to share their extensions, they must mark “any additions, omissions, or other modifications to the HL7 Protocol Specifications” and make sure they are “clearly identified to end-users” (HL7 Governance and Operations Manual, 2017).  In other words, they can create, use, and sell privately developed extensions, but they must clearly display to end-users that these changes are not part of the FHIR standard.  These conditions are in place to preserve the integrity of the FHIR standard and to enable HL7 to maintain its position as “an official source of the most current and accurate versions of the HL7 Protocol Specifications” (HL7 Governance and Operations Manual, 2017).  Data standards lose their utility if their specifications are not publicly available in a centralized location.

While these governance protocols are well-intended to maintain the integrity of the FHIR standard, they might not go far enough.  Paolo Marcheschi points out that “the extensions have also a downside because the danger is to have a lot of different extensions implemented in different ways, by different organizations.” (Marcheschi, 2016).  And Mandel et. al. agrees by pointing out that “diverse organizations may produce incompatible profiles that lead to fragmented semantics and serious interoperability challenges” (Mandel, Kreda, Mandl, Kohane, & Ramoni, 2016).  For example, a large company could hypothetically adopt the use of FHIR in its health information products.  It would then likely want to extend the standard to better suit its own needs, which it would be required to mark to the end-users as separate from the FHIR standard, as designated in the HL7 Governance regulations.  However, this company would be under no obligation to ever integrate these extensions into the FHIR standard and, without this check, the two data standards would gradually diverge.  At scale, with every large player extending FHIR in an effort to differentiate itself, the FHIR implementations could potentially become incompatible over time, and any interoperability progress would be lost.

The FHIR community is aware of this.  It is recognized that “with respect to semantic fragmentation, community consensus for FHIR profiles will be key for the successful deployment of substitutable apps.” (Mandel, Kreda, Mandl, Kohane, & Ramoni, 2016).  That is, people and a strong community are the key to create an interoperable data platform which does not diverge over time.  Grahame Grieve puts it eloquently when he says, “The rocket science is not building the software.  The rocket science part is building a community around the software. First comes community, and second is the technology standard” (Grieve, 2017).

“Advanced precision medicine and oncology applications need more than ever, simple and immediate solutions that we can implement right away leveraging actual standards” (Marcheschi, 2016).  Together, we can work to become the change the healthcare industry so desperately needs.  We can rally behind FHIR, a standard where interoperability and the enabling of technology is a foundational value.

Works Cited

Benson, T., & Grieve, G. (2016). Principles of Health Interoperability: SNOMED CT, HL7 and FHIR (3rd ed.). London: Springer-Verlag.

Brull, R. (2013, Mar 26). 5 Things to Know About HL7 FHIR. Retrieved Apr 6, 2017, from Health Standards: Expanding Conversation on Healthcare Technology: http://healthstandards.com/blog/2013/03/26/hl7-fhir/

Committee on Engaging the Computer Science Research Community in Health Care Informatics; National Research Council. (2009). Computational Technology for Effective Health Care: Immediate Steps and Strategic Directions. (W. W. Stead, & H. S. Lin, Eds.) Washington, DC: The National Academies Press.

Grieve, G. (2017, Apr 7). Inventor of FHIR and FHIR Product Director at HL7. (A. McCollam, Interviewer)

Health Level Seven International. (2017, Feb 27). Welcome to the Argonaut Project. Retrieved Apr 12, 2017, from Argonaut Wiki: http://argonautwiki.hl7.org

(2017). HL7 Governance and Operations Manual. Health Level Seven International. Ann Arbor, MI: Health Level Seven International.

Hochheiser, H., Castine, M., Harris, D., Savova, G., & Jacobson, R. S. (2016, Sep 15). An information model for computable cancer phenotypes. BMC Medical Informatics and Decision Making, 16(121).

Kasthurirathne, S. N., Mamlin, B., Kumara, H., Grieve, G., & Biondich, P. (2015, Oct 7). Enabling Better Interoperability for Health Care: Lessons in Developing a Standards Based Application Programing Interface for Electronic Medical Record Systems. Journal of Medical Systems, 39(182).

Mandel, J. C., Kreda, D. A., Mandl, K. D., Kohane, I. S., & Ramoni, R. B. (2016, Feb 17). SMART on FHIR: a standards-based, interoperable apps platform for electronic health records. Journal of the American Medical Informatics Association, 23, 899-908.

Marcheschi, P. (2016, Nov 4). Relevance of eHealth standards for big data interoperability in radiology and beyond. La Radiologia Medica.

Miliard, M. (2017, Feb 21). Argonaut Project building on success with FHIR implementation guide. Healthcare IT News.

Office of the National Coordinator for Health Information Technology. (2014). Connecting Health and Care for the Nation: A 10-Year Vision to Achieve an Interoperable Health IT Infrastructure. Washington, DC: Office of the National Coordinator for Health Information Technology.

Solbrig, H. R., Prud'hommeaux, E., Grieve, G., McKenzie, L., Mandel, J. C., Sharma, D. K., & Jiang, G. (2017, Feb 16). Modeling and validating HL7 FHIR profiles using semantic web Shape Expressions (ShEx). Journal of Biomedical Informatics, 90-100.

Topaz, M., Seger, D. L., Goss, F., Lai, K., Slight, S. P., Lau, J. J., . . . Zhou, L. (2016, Feb). Standard Information Models for Representing Adverse Sensitivity Information in Clinical Documents. Methods of Information in Medicine, 151-157.

Reprint - McDonald's Dropping Health Insurance...? (Oct 17, 2010)

The threatened repeal of the ACA might lead to the return of Mini-Med health plans - that is, health insurance policies which provide only minimal coverage to beneficiaries with low benefit caps.  Before the passage of the ACA, these bare-bones policies were available largely to retail and food service workers through their employers.

This is a repost of something I wrote in 2010 about these plans in response to concerns that the ACA would cause more Americans to lose coverage than gain it.

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There has been a bit of press lately about the recent healthcare reform laws causing 30,000 McDonald's full- and part-time hourly employees to lose their health insurance coverage. My first thought when I heard this was, “McDonald's offers health insurance coverage to its hourly employees?!?” I was surprised that their employees were ever offered any health insurance options, even if they're possibly being discontinued now. As such headlines are quite politically fraught as of late, I decided to dig in to this a little bit.

First, according to Yahoo! finance, McDonald's employs 385,000 full time employees – over one tenth of a percent of the United States population. It does not specify if this counts all franchise employees or non-American employees, and it specifically excludes part-time employees. However, it does mean that, at most, only 7.8% of McDonald's employees take advantage of these benefits. Upon review of the benefits, it's easy to see why.

According to the Wall Street Journal, the lowest tier plan offered costs $727.48/year in premiums with an annual benefit cap of $2000, offered through the commercial branch of BCS Insurance Group. This is great if you have a monthly generic prescription that costs you $171/month (with $5/prescription copay, not including the office visit to get the prescription), but pretty worthless otherwise. If you're not planning to get sick this year, you're better off paying for a $100 physical out of pocket. If you are planning to get sick, $2000 won't cover much surgery or many visits to a specialist.

The top tier plan costs $1679.60/year. The outpatient benefit still caps out at $2000, but it includes $8000 of inpatient coverage. This won't cover anything catastrophic, but it might cover an unexpected accident.

These are pretty lousy benefits, but they're not necessarily as bad as they appear on the surface. A less obvious benefit to having health insurance is that, even in excess of service caps, members are often eligible to pay the insurance company's contractually allowed amount for medical care, rather than the full charge amount. Insurance companies have contracts with providers to pay the lesser of the billed amount or the amount stipulated in their contracts. These adjustments happen even to charges that are deemed to be patient responsibility. Of course, this isn't particularly helpful to an individual earning $15,080/year at the federal minimum wage level, or 140% of the federal poverty line for a family of one.

I recognize that not all McDonald's employees make as little as minimum wage, and I recognize that many employees probably have circumstances where this level of health insurance coverage makes financial sense. However, many of these employees are better off navigating the bureaucracy of getting coverage through Medicaid, if eligible. If not, they're probably better off declaring bankruptcy, rather than paying a sufficiently large hospital bill.

My point is that it doesn't really matter if McDonald's stops offering health insurance coverage, as they aren't really offering it to begin with.

Comparison of 6 Proposed ACA Replacements

The Kaiser Family Foundation just published a comparison of six proposed replacements to the ACA.  The issue brief spells out changes to Medicare that would result if each of these proposed replacements to the ACA went into effect.

A few interesting things to note across the six bills:

• Three proposals would repeal the ACA creation of the CMMI
• Two proposals would repeal the ACA phasing out of the Part D Coverage Gap
• Four would repeal the ACA fee on branded drug manufacturers; one does not specify

There are also a few positive ideas:

• One would consolidate all MSPs and require states to have a uniform eligibility test for them.  QMB, SLMB, and QI as they currently exist are unnecessarily complex.
• Two would combine Medicare A and B deductibles and out of pocket limits. If done right, this could bring some positive aspects of Part C to traditional Medicare.

Finally, one would limit the amount that could be charged to patients, including Medicare beneficiaries, for out-of-network emergency care.  Traditional Medicare beneficiaries have protections against this already - providers who do not accept assignment from Medicare may only bill the patient up to 15% more than the Medicare approved amount for most charges.  These are called legitimate excess charges.

Overall, these proposals are mostly leaving ACA Medicare benefits alone, such as covering preventive services in full - only two are specifically repealing all ACA Medicare provisions.  However, most of them are repealing ACA sources of revenue including repealing taxes and fees on drug manufacturers, health insurers, and high-earning individuals.

Why Reproductive Rights Matter to Me

I would have liked to have started this by saying that reproductive rights are suddenly taking center stage in our national discourse again. However, this is not the case. Reproductive rights have been a hotly contested issue for as long as I can remember. These rights have been fiercely attacked and defended with arguments, values, data, and hyperbole. The noise can become deafening.

Like many people, I have a deeply personal reason for wanting politicians to stay out of the way when I seek to access any form of contraception that science can devise or, heaven forbid, when I seek to terminate a pregnancy. However, I feel like my specific circumstance is largely overlooked in the ongoing discussion.

       

Chris, age 13. First day of 8th grade, 1993.

Twenty-three years ago this past Monday, my brother Chris passed away at the age of thirteen. He was born with Duchenne Muscular Dystrophy, an X-linked recessive genetic disease which disrupts the body’s manufacture of the protein dystrophin. Dystrophin plays an important role in preventing muscle cells from being damaged through regular use. People with this disease have their muscles gradually wear out as they use them. By age eleven, Chris needed a wheelchair to move around.  He developed congestive heart failure. Shortly before he died, he started throwing up all of the time because the smooth muscle in his digestive tract was wearing out. He spent the last month of his life in an intensive care unit receiving nutrients intravenously, while remaining friendly and engaging the whole time.

Chris and me, ages 7 and 9. Summer 1987.

Chris and I had a special relationship. I was fewer than two years older than him, and he was my only sibling. We spent most of our free time together - partly by circumstance, mostly because we wanted to. He was safe to enjoy Nintendo and Teenage Mutant Ninja Turtles with, while most of my friends were more interested in George Michael and 90210. He and I made up games of imagination and word-play together and shared everything. He would sometimes cry when I got allergy shots because he didn’t want me to get hurt. I would sometimes whisper in his ear when he was sleeping that he didn’t have Muscular Dystrophy because I saw subliminal messages work on The Flintstones and hoped it might heal him. I stopped when I considered how sad he would be if he believed me and hurt himself trying to get out of bed the next morning because mind over matter was not enough.

Since about the age of nine or so, I’ve known that I’m a carrier for Duchenne Muscular Dystrophy. The disease is X-linked recessive, so women don’t typically get this type of Muscular Dystrophy – their second X chromosome makes up for the damaged one. However, their sons have it at a rate of 50%. Tests for carrier status in the 1980’s were somewhat unsophisticated, so I had part of my X-chromosomes sequenced in 2008 shortly after I got married to confirm my carrier status. It turns out that a single DNA base pair of my and my brother’s (and probabilistically my mother’s) genome has caused all this heartache. There is an A where there should be a G, just a single random mutation. This turns a tryptophan amino acid into a stop codon, cutting short the entire dystrophin protein generated by that chromosome.

I decided decades ago to never have children. This disease dies with me. I’m aware that there are options out there with IVF and who knows what else to reliably screen my ova for the broken X-chromosome pre-conception. But getting a treatment like this feels dishonest to me. Like somehow Chris wasn’t good enough so I have to have babies that aren’t like him, which absolutely breaks my heart. Besides, I started forging my life in a child-free direction before I had even heard of these technologies. The idea of motherhood has always felt alien to me, in part because it has always been such a challenging thing for me to attain responsibly.

When I hear old men in power trying to take away my contraceptives because they think that they have any right to an opinion about how I manage my own reproduction, I feel it in my marrow, I feel it in my liver. Can they possibly appreciate the level of heartbreak they are wishing on me? On my husband? When I hear about politicians thinking they have any business about whether or not I terminate a pregnancy, I go numb. I have gone to extensive lengths my entire adult life to make sure I never have to make that decision, because I can’t imagine a harder one. Were I to become pregnant, I would have to find out as soon as possible if the fetus I was carrying was affected and then possibly need to make an immensely difficult decision. Should I abort the fetus for being like my dear brother? Or bear a son and cry myself to sleep every night for twenty years while he wastes away in front of me in a pattern I know too well? To have institutional powers get in my way or make the decision any harder is one of the cruelest things I could imagine happening to me.

This is an old story to me, but not one that I often tell. It’s very personal. But everybody has their own personal narrative and reasons for living the lives they do and making the choices they do. Don’t assume you know their reasons.

Drawing by Lisa Burstein, 1993, based on Spring 1987 photo.

SHIP in Danger of Losing Federal Funding

For years now, I’ve been volunteering with an organization called SHINE (Serving the Health Information Needs of Everyone).  SHINE is the Massachusetts implementation of the nationwide SHIP (State Health Insurance Assistance Programs).  SHIPs provide free, personalized, unbiased advice to Medicare beneficiaries about their health care coverage options.  

Every state implements SHIP a little differently.  In Massachusetts, SHINE Counselors complete 50 hours of rigorous training, followed by a test administered by the Massachusetts Executive Office of Elder Affairs.  After this, the counselors must attend monthly meetings to stay up-to-date with policy and regulatory changes and take an annual recertification exam.  I’ve been a state certified SHINE Counselor since June 2015 and just passed my recertification exam.

The material is not easy.  For example, did you know:

• Massachusetts has a program called CommonHealth available for people with disabilities.  It offers the same benefits as MassHealth (i.e. Medicaid), but it’s not the same program.  If you’re over 65, you must work 40 paid hours per month in order to participate, but this is not the case if you’re under 65.  You can get kicked out of the program and lose your health coverage if you turn 65 without realizing this.

• If you have a privately administered Medicare Advantage or Medicare D plan, your doctor/hospital/pharmacy can stop participating with the plan’s network in the middle of the plan year, leaving you without access to your preferred medical providers until open enrollment in October (when you can select a new plan to take effect in January).

• Medicare will not reimburse hospitals for the first 3 pints of blood you receive.  You either have to give it back, have someone give it back on your behalf, or pay for it.

While the program is staffed largely by volunteers, it still costs money to administer.  In total, the 54 state and territory SHIP programs nationwide receive $52.1 million/year of federal funds.  That’s less than $1 million per program per year.  Some states provide supplemental funding to their program; Massachusetts does not.  The Massachusetts SHINE program only has these federal funds to serve over 100,000 Medicare beneficiaries.

But wait - there’s more.  The Senate Appropriations Committee last month nearly unanimously voted to completely defund SHIP in the FY17 federal budget through the Labor, HHS, Education Appropriations Bill.  This still needs to get through the House of Representatives before it passes, but it doesn’t look good.  

The thing is, the need for SHIPs is largely a failure of markets and the government.  People turning 65 who are new to Medicare turn to SHINE when the Social Security Office can’t answer their questions or can’t give them an appointment (employees of the SSA will often refer over their complex cases).  Major medical centers all have financial services offices staffed with employees who are paid to help low-income patients apply for Medicaid and other assistance programs, among other things, but they often miss the people who don’t know to ask for help.  Medicare D is structured in such a way that elderly people in cognitive decline need to pick out a new plan every year to make sure their necessary prescription drugs are still covered -- which means that they need to call SHINE to operate the internet for them each year because there is no government-administered Part D plan that they can trust to be reliable from year to year like there is for Medicare A and B.  

An army of unpaid retirees, students, and housewives is not a sustainable solution, nor should it be.  Charity and non-profit work is virtuous, but it is not a strong foundation for America’s health care industry.  If people with complex situations can just be handed off to volunteers without resources, what are we paying for?  If our health care system doesn’t serve all of us, it doesn’t serve any of us.  If it only serves us when we are young and healthy, and can turn to dust when we suddenly have a permanently cognitively debilitating seizure; urgently need an anti-clotting drug that is not on our plan’s formulary; or our trusted medical specialist stops accepting our insurance six months before we can buy new coverage at open enrollment - if it only serves us when our health needs are simple, what do we really have?

In all, SHIP does real good and helps real, vulnerable people with nowhere else to turn.  If it loses its federal funding, even if the program continues without it, people will be hurt.  Yet the program remains a symptom of a fragmented, expensive health care system that often harms the people most in need of its help.

Beyond Binary: Collecting Gender Identity Data in Federally Qualified Health Centers

Learning from Direct Sales Communities

While Jono Bacon's book was a great starting point for building my online community of patient advocates, my community had several characteristics different from an open source software community.  The first, as I referenced in my last post, was that technology did not come naturally to most of my advocates.  New software tools needed to be rolled out mindfully.  Another important distinction was that my advocates were not volunteer software developers, they were independent contractors building their own businesses.  Engaging as the work was for many of them, this wasn't a hobby.

To better customize my community building efforts, I turned to my sister-in-law Tammy Romage, who is a National Sales Director with Mary Kay.  She leads hundreds of independent contractors, which is what I wanted to set the groundwork to aspire to.  She has also been doing this long enough that building an online community was not really a consideration when she started out, which made her a rich source of low-tech community building solutions. 

One of her community building tools is her weekly open conference call that she has held at the same time every week without fail for years.  She has developed multimedia onboarding materials (including pre-recorded phone messages) and writes a weekly newsletter.  She is public with praise and celebrates the success of her consultants. 

She spoke of the need to develop leaders within the community - for example, her leaders can step up and hold the weekly call if she falls ill.  They can also be early adopters and promoters - "first followers" - supporting her when she wants to roll out new tools or initiatives.  Her first followers give her traction and support when she kicks off community activities like having 200 selfies uploaded to her Facebook community page by the end of the month.

Her message was to keep the contracting work in the context of the consultant.  She designs all of these materials and activities remembering that she must use them to add value or save time for the contractors.  Coach and support the the contractors, but allow them to work for themselves.  Let them embody their own strengths and grow their own businesses.  Her advice was to be a fire underneath, not a blanket over top.