Monthly Archives: February 2014

February DSMA Blog Carnival. What is an advocate?

February 17, 2014 – 12:03 pm

The February DSMA Blog Carnival picks up on the advocacy theme that’s been prevalent in our community in the first two months of 2014. The question is:

What is your definition of an advocate?

Officially, dictionaries define an advocate as a person who speaks or writes in support or defense of a person, cause, etc. But an advocate is so much more than that.

To begin with, an advocate is someone who identifies with a need, an issue. They can see a problem, and they realize how this problem affects people. At this point, the need of others becomes their cause too.

An advocate wants to be part of the conversation surrounding their cause. They expect to be part of the solution. They protect those who are affected by the negative impacts of the issues they’re facing. They bring a voice to the voiceless, a spotlight to shine on their cause and the people affected by it.

Advocates marshal resources and raise money and set up tables and hand out information and give talks, so people not affected by an issue have an opportunity to become part of their team, the team fighting for improvement and empowerment for all who are part of our diabetes community.

What is an advocate not? An advocate is not someone who is afraid of the word “advocacy”. Admit it… that word makes you cringe a little, doesn’t it? Let’s get rid of the stigma of this word, and the feeling it gives us when we read it or speak it. Advocacy, advocacy, advocacy. Get comfortable with it. Advocacy, big or small, is good, and it should make us feel good when we define it through our actions.

In addition, advocates are not people who worry that they’re not good enough, or influential enough, or important enough to do anything meaningful. Here’s a news flash: You Are. They’re not concerned that whatever they’re doing isn’t big enough or special enough to be helpful. Fact: If you’re doing something to further the cause, no matter how small your effort is, you are a champion and worthy of the definition “advocate”.

Advocates are those who possess the empathy to identify with a need, and the resilience to do what they can to eliminate the need. They further the issue they’re fighting for, and they support and empower others who are doing the same. They are not afraid to do something that will help, no matter how small or big.

Advocacy comes in all forms. Bravery does too. If you speak honestly, with a focus on making things better for people living with and affected by diabetes, you are an advocate. And I thank you for what you’re doing for me.

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/02/february-dsma-blog-carnival-3/
 
 
 

By StephenS | Posted in DSMA Blog Carnival | Tagged , , , | Comments (4)

Recipe! Cured fish with tequila.

February 13, 2014 – 10:30 am

Lots of pictures in this post today… I’ll try to do this recipe justice.

Living where I live today is different from anywhere else I’ve lived. I grew up catholic, way back in the old days when I used to go to mass all the time. However, the neighborhood I live in now has a high concentration of Jewish Americans, as well as Russian Jews and Polish, African, and, you get the idea. Over time, I’ve been lucky enough to make lots of friends in this part of the world, which means I’ve been invited to breakfasts, lunches, dinners, and everything in between by people who are as friendly as can be. Often, there’s some kind of cured or smoked fish on the menu. Not a big deal, right? Unless you’re used to eating beef and pork all the time. There’s a huge difference between a meat-and-potatoes Midwestern diet like I grew up with, and a Mediterranean-influenced Kosher diet.

But I’ve gotta admit… some of the food I’ve been exposed to has been awesome. Like the gravlax that I put together the other day. This isn’t a Kosher-exclusive dish, to be sure, but had I not been exposed to the influences I’ve been exposed to here, I probably never would have tried this. And I love it!

You’re going to find this is a very easy recipe, and one you can vary according to what’s on hand in your pantry and what you really like. If you close it up tightly after it’s cured, you can probably keep it in the fridge for four or five days.

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I started with a ¾ pound filet. What you see was labeled as steelhead trout, but you might also see it as freshwater salmon in places. You’ll also need a deep dish, and a brick or something weighty to place on top of the fish while it cures. For my recipe, I included:

½ cup of kosher salt

1 tablespoon celery salt

1 tablespoon brown sugar

1 tablespoon dill (fresh is best, but I used dried because that’s what I had)

1 tablespoon McCormick’s® Grill Mates® mesquite seasoning

1 tablespoon extra virgin olive oil

Tequila

Basically, you mix all of the dry ingredients, then add the olive oil and tequila until you have what seems like a dry paste. If you think your mixture is too wet, just add some more dry ingredients.

DSC01347

Now it’s time to get your hands dirty. Put your fish in your deep dish… this is where it will sit for a couple of days. Take your mixture and rub it over your fish. Make sure the mixture covers every single inch of the surface of the fish. If you don’t have enough to cover the fish, make more.

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Once the fish is covered in your seasonings, wrap everything up. First in plastic, then in foil. Again, make sure the entire surface of the fish is covered. Place the fish in your refrigerator, and then place your “something weighty” on top. We used a brick from our landscaping outside, and wrapped it in foil. This helps your spices to really get into your fish, and it helps with the curing process too.

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Then the hard part starts. Because you have to wait 48 hours to unwrap everything and dig in. Don’t be surprised if some of the liquid drains from the fish during this time. That’s normal, and it’s why you have it in a deep dish.

Once your 48 hours are up, get the dish out of the refrigerator and uncover everything. If you have to, use a paper towel to remove any leftover moisture.

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I love bagels, but I don’t love what they do to my BGs, so I mostly avoid them. Instead, I opt for small crackers for my lox. I thinly slice the fish, then put it on the cracker with a little cheese (provolone in this case, because… that’s what I had), and maybe some tomato. If I can make some sort of swanky mustard sauce for it, I might do that too, but that’s a matter of personal taste. Anyway, the recipe turned out great, and I’m looking forward to enjoying this for the next few days, and sharing it too.

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So there you have it. Good for breakfast, lunch and dinner. Sorry I don’t have a carb count; any carbs come primarily from the tablespoon of brown sugar in the spice mix, so it can’t be too much.

I hope you get a chance to make this recipe too. It’s a great example of something that’s easy, but tasty. Enjoy!
 
 
 

By StephenS | Posted in Recipes! | Tagged , | Comments (2)

#IGNITEInterop – Let’s all communicate (Part 2).

February 11, 2014 – 9:41 am

DSC01377
Since it’s only 40-some miles away (though a two hour commute) from home, and I got enough advance notice, I headed to Washington, D.C. last Thursday for HCI-DC 2014: Igniting an Interoperable Health Care System.

The event was co-hosted by two different groups: The Gary and Mary West Health Institute, which, according to its website, “is an independent, non-profit 501(c)(3) medical research organization whose mission is to lower health care costs by developing innovative patient-centered solutions that deliver the right care at the right place at the right time.” And the Office of the National Coordinator for Health Information Technology (trust me, it’s an actual government office).

The idea of the day was to get as many people in the room as possible to talk interoperability in health care. Not just, “Can I get my CGM to talk to my pump”, although there was some of that. But there was also a lot of talk about how to push for standards in medical record-keeping, and making them accessible to health care professionals, in the same format, worldwide. Imagine this: I have an accident in another city, I get rushed to the ER, and a doctor could pull up all of my medications and doses, and my pump settings, etc. Today, all of that might be on paper somewhere, and depending on the timing, a doctor may or may not be able to get access to it right away. You get the picture.

There were things I liked about this conference, and things I didn’t like. I hope I can explain a bit here. Yesterday, I talked about the things I liked. Today, things I didn’t like.
 
 
What I didn’t like:

Unless they were hiding under a chair or something, there were no manufacturers present at this gathering. I don’t know if they weren’t asked to attend, or if it was too long a trip from California or Europe or wherever they are, or if they just didn’t want to talk about interoperability at all.

If it’s that last thing: Let me just share something I mentioned in a conversation with someone over lunch that day.

I’m sure that the cost of the CareLink software is baked into the overall cost of my Medtronic insulin pump. But if Medtronic, for example, decided to make their code available to all, or if they agreed to adhere to a standard software protocol with future products, I would still want an insulin pump. And you know what? If they did get on board with interoperability, I might actually want to buy their pump even more. Insulin pumps and CGMs won’t go away once their data is “democratized”, to borrow a phrase I heard that day. Each patient will buy what’s best for them at the right time, but they will still want pumps and CGMs. And if manufacturers finally move toward a standard for device interoperability, they would finally be free to spend less time worrying about how to make their software proprietary, and spend more time worrying about how to make a better product (disclosure: I’m perfectly happy with my insulin pump right now, even if I see it as less than perfect).

There was something else that touched me that day. I want to move delicately around this subject. But… here’s the thing: There were a few female presenters (like, three). All the rest were male. Nearly everyone in a panel discussion or presenting was white.

Now, I realize that even if there was a concerted effort to bring more diversity to the stage for HCIDC 2014, there probably still would have been an overabundance of white people facing the audience. That’s just the way it is. But the fact is, the audience was pretty diverse in itself. Enough so that there were a couple of tweets from others who noted the steady stream of people walking onto the stage wearing a dark jacket, white shirt, and a tie.

Washington is a very diverse city. America is an amazingly diverse country. For next year’s event I kind of hope the presenters, or the members of panel discussions, will reflect that diversity just a little more.
 
 
So, now my overall take on this event:

I liked it. I really liked what I heard from everyone, onstage and off. I’m encouraged by where the discussion about interoperability is headed in the future. The will to make this happen, or at least get down the road a little farther, is really starting to crystallize.

But without manufacturers becoming part of the discussion, we’re not going to get very far. As Malcolm Gladwell alluded to in his keynote address, “No one will work toward interoperability in health care unless it is framed as urgent, imperative, life or death”.

Well, guess what? It is. Interoperability isn’t everything. But it is a game changer, because it would 1) Free up already overworked people from writing and entering so much data that can’t be shared anywhere else but at the point of care; 2) Lower costs for manufacturers, because once a standard is in place that everyone can follow, work on proprietary software will be minimal; and 3) Help improve patient outcomes, due to devices working together to ensure safety and optimal results for the patient, rather than being in their own silos just so they can generate more imagined revenue for the maker.

I agree… the time is now. We have the means and the determination to make interoperability in healthcare a reality. I hope this event comes back next year, and I’m looking forward to what kind of changes will happen between now and then.
 
 
 

By StephenS | Posted in Healthcare | Tagged , , , | Comments (2)

#IGNITEInterop – Let’s all communicate.

February 10, 2014 – 9:38 am

Since it’s only 40-some miles away (though a two hour commute) from home, and I got enough advance notice, I headed to Washington, D.C. last Thursday for HCI-DC 2014: Igniting an Interoperable Health Care System.

DSC01339The event was co-hosted by two different groups: The Gary and Mary West Health Institute, which, according to its website, “is an independent, non-profit 501(c)(3) medical research organization whose mission is to lower health care costs by developing innovative patient-centered solutions that deliver the right care at the right place at the right time.” And the Office of the National Coordinator for Health Information Technology (trust me, it’s an actual government office). The idea of the day was to get as many people in the room as possible to talk interoperability in health care. Not just, “Can I get my CGM to talk to my pump”, although there was some of that. But there was also a lot of talk about how to push for standards in medical record-keeping, and making them accessible to health care professionals, in the same format, worldwide. Imagine this: I have an accident in another city, I get rushed to the ER, and a doctor could pull up all of my medications and doses, and my pump settings, etc. Today, all of that might be on paper somewhere, and depending on the timing, a doctor may or may not be able to get access to it right away. You get the picture.

There were things I liked about this conference, and things I didn’t like. I hope I can explain a bit here. Today, I’ll give you the things I liked. Tomorrow, things I didn’t like.
 
 
Things I liked:

The first panel discussion covered Perspectives from the Point of Care. It was an interesting discussion moderated by the Chief Medical Officer of the ONC (Office of National Coordinator for Health Information Technology). The panel included some great voices from a healthcare provider point of view, and from the patient point of view, including Anna McCollister-Slipp, Co-Founder of Galileo Analytics and a fellow Type 1. A large part of the discussion centered around Anna’s Type 1 diabetes, the devices she uses, and these two facts: 1) None of her devices talk to each other, and 2) Her healthcare providers cannot, due to rules coming down from the healthcare system they’re working in, download any information from her pump or CGM. From first-hand knowledge of the conversation, I can say that everything Anna said, and everything she advocated for, was right and correct and she was a super advocate for PWDs everywhere. I wish you could have been there to hear it.

Pretty much every discussion during the day was like the one above. There was a real feeling that the time is right to move toward interoperability in health care. One of the photos that really brought the point home was when we were shown someone in an ICU room, with about ten different machines at work helping to keep the patient alive. And none of them talked to each other, or shared their data with any system in the hospital. So doctors or nurses needed to view what was happening with each machine, then write the data down in a chart or a folder, then enter some of that data into the hospital’s system. How much time does that take? How much care is not being given to the patient while a doctor or nurse is compiling data like a drone?

I liked the following statements that were made (please understand that most of these are paraphrased):

Anna McCollister-Slipp: “An A1c is helpful, but kind of like using The Farmer’s Almanac to plan your afternoon. My endo needs to be able to see my CGM data”.

Stephen Jones, President and CEO, Robert Wood Johnson University Hospital and Medical Center: “If health care systems develop uniform standards, we can then use our buying power to drive interoperability, and force the issue with manufacturers and vendors”.

Dr. Michael Johns, Chairman of the Center for Medical Interoperability: “We need to move now, or we’re letting down the next generation”.

There were many comments like this throughout the day.

Also, I very much liked the keynote speech from Malcolm Gladwell, best-selling author of The Tipping Point and other books, and a former writer on the medical beat for the Washington Post. Which, he reminded us, meant that if he were still at that job, he’d be covering the event this day for the paper.

He used three examples of how interoperability in other arenas allowed for increased outcomes for consumers and businesses, not less. How the interoperability wasn’t always made possible by the people who designed the parts that inspired the interoperability. And how the time is now… the moment is right for pushing this cause forward. He mentioned how there are three roadblocks to interoperability: Culture, meaning how things are done today and how people expect them to be going forward; How to frame the message, because sometimes it’s more than shouting, but rather getting people to understand when, and why they have reached a critical moment that requires change; and the concern over Consequences to change. Maybe one part of a business does suffer, but another part of the same business grows as a result of the implementation of interoperability. There was a good recap of the speech written at Healthcare IT News by Diana Manos, and I will refer you there for more:
http://www.healthcareitnews.com/news/gladwell-interoperability-war

A couple of the things he said that resonated with me:

“The time for deep thinking about interoperability is over. We already know it’s important. The resources are there. Now we need to act.”

“No one will work toward interoperability in health care unless it’s framed as urgent, imperative, life or death.”

Tomorrow, more on this event, especially what I didn’t like, and my take on a few things.
 
 
 

By StephenS | Posted in Healthcare | Tagged , , , | Comments (2)

Remember to Spare a Rose… Don’t forget to Save a Child.

February 9, 2014 – 11:41 am

SpareARose

(click on the banner to give– now)

 
 
The Spare a Rose, Save a Life campaign is getting closer to its target every day. They’re $6,000 or so toward their goal of raising $10,000 by Valentine’s Day to provide life-giving insulin to children in need around the world.

The notion of the Spare a Rose, Save a Life campaign is simple: If your intent is to give a dozen roses to someone special this Valentine’s Day, why not give eleven and donate the cost of that 12th rose (about $5.00 USD) to the International Diabetes Federation’s Life for a Child campaign? Only $5.00… You can handle that, right? You might even be able to handle more than five bucks.

What does that money buy?
 
 
Five dollars provides life-giving insulin for a child in a developing country for an entire month.

Thirty dollars helps to keep a third world child with diabetes alive for six months.

Sixty dollars worth of insulin sustains life for a child with diabetes living in Haiti, Kenya, the Phillipines, and 40 other countries for an entire year.

There are just a few days left in the campaign, though you can give to Life for a Child anytime. Won’t you help? Let’s continue to show how special and giving the Diabetes Community is.

The need exists… Some have the means to help… And all of us have the ability to communicate. So join in the final push toward the goal for Spare a Rose, Save a Child. If you haven’t yet, consider making a donation today at sparearose.org/give. Or click on the image at the top of this post. Oh, and don’t forget to share this initiative with all of your Friends on Facebook and Followers on Twitter.

Let’s go over that $10,000 number and revel in the lives that will be saved through your efforts.
 
 
 

By StephenS | Posted in Advocacy | Tagged , , | Comments (1)
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