Graham-Cassidy vs. Access to Genetic Counselors

(Welcome to the blog I started 12 years ago as a library science student. It’s been awhile.)

I’m now a second year genetic counseling student, and a student member of the National Society of Genetic Counselors. I’m new to the organization and its structure, and the culture of its members as a whole. But I’m still a member, and have been for over a year. I’ve taken advantage of that membership to network and to get access to educational opportunities related to specific disorders and on topics like pharmacogenetics. And as a member, while I respect how NSGC communicated their decision to not make any statements on the Graham-Cassidy healthcare bill, I feel a need to speak out and share, as an individual, why I’m against that decision to not to take a stand.

(These are the two pieces of legislation that are at the center of this: Graham-Cassidy and a bill for genetic counselors to be recognized as providers under Medicare, known as Access to Genetic Counselors.)

First, I’d like to challenge a few points in the NSGC email itself.

1. “The outlook for the [Graham-Cassidy] bill is bleak.”

But it could still pass. With only two known confirmed “no” votes, Republicans could still get the legislation passed with 50 votes + Vice-President Pence.  Even if the bill fails, this passive stance feels like gambling with the healthcare of an estimated 32 million people.

2. “To maximize the likelihood of success for our [Access to GCs] bill, and more importantly, to ensure improved patient access to our services, we are focused on this effort and not broader health reform.”

As I see it, the proposed bill isn’t reform. It’s a step (or many steps) backward that would affect our current patients as well as any potential patients. I am absolutely convinced that if this bill passes, access to our services would be impacted, and so this statement can actually be used to justify exactly why the organization should come out against Graham-Cassidy. (Laura Hercher’s post at the DNA Exchange does a much better job of arguing the finer points of this.)

I can imagine and appreciate that many individuals have poured their hearts and souls, not to mention time, into getting licensure (which I absolutely support, and have stated my commitment to actively help), but this feels like not seeing the forest for the trees.

3. “Our reach is limited and this will ensure we are using our voice where it is needed most.”

Why should we sell ourselves short? We are a national organization, with influence on patient advocacy groups, the American College of Medical Genetics, and all the millions we reach that we were so excited to learn about during my first annual NSGC meeting in Columbus!  We may not be the American Medical Association.  But I think I can make an argument that our reach is broader than the National Organization for Rare Diseases just by the nature of the places where genetic counselors are found.  And if that’s a misinterpretation of “limited” and the issue is rather that NSGC doesn’t have the resources to put out a statement, I think there are plenty of members who would volunteer to draft and vet a statement, and who could do it quickly.

And I think one of the things I’m struggling with the most in this statement is the idea of need: it’s an ethical question that I don’t feel well equipped to articulate, but at the bottom lies this: how many people will benefit from GC licensure, vs how many will be harmed by Graham-Cassidy?

And ultimately, I truly believe we don’t have to choose between the two. We can continue the fight for recognition and licensure while taking a stand against Graham-Cassidy.

And here’s how I came to that conclusion, asking myself the same question I’ve been taught to ask patients struggling with a decision around testing: how would I feel with each result?

So if NSGC doesn’t take a stand on Graham-Cassidy (“G-C”) and:

  1. G-C passes but our Access bill doesn’t.
    • Not only are we mourning a major setback for our profession, but we’re on the wrong side of history. And why should our patients fight for us the next time around when we didn’t support them? Some of them will, of course, because some of them will realize the importance of access to genetic counselors and will have the resources to stand with us. But many of them will have to spend more time and effort getting access to much more basic care.  Never underestimate the power of trust – genetic counselors understand that better than many.
    • Alternatively, we could have stood against G-C, and now we’re all in the continuing fights together (and let’s face it, some genetic counselors and their families would likely have their own healthcare affected by G-C).
  2. G-C passes, and so does licensure.
    • Good for us! And now we can start serving more people…in a smaller pool of those who have access to coverage?  And what services are actually covered? We’re really not helping ourselves.
  3. Neither passes.
    • We still have all the states who have legislature for licensed genetic counselors, and all the states still working on it. We will have to keep fighting for recognition, but if our bill went down because we stood against G-C, then there are bigger issues we need to face all together (and I tend to think that’s true regardless).  And our patients (and friends and family and selves) at least still have the protections of the Affordable Care Act.
  4. G-C fails, but licensure passes.
    • This is what NSGC suggesting would be the case, in a way.  Yay, the ACA is in place!  Yay, we’re recognized as billable providers!  But hey – there’s still some damage done.  We’ve set a precedent of putting our own professional interests first, above the very people we’re serving.  That’s simply how I feel, deep down.  And I don’t like it.  But will I forget? After all, everything ended up ok.  I think that’s why I felt like I had to share these thoughts.

And in all of these outcomes, there is the “what if.” What if NSGC had put out a statement that would have, if not directly changing a senator’s mind, then perhaps indirectly gotten them there?  We could be part of growing the snowball rolling down the mountain, one that has the potential to hit its target. Instead, we’re a lump, lying in the path and doing nothing except possibly making the snowball bounce and miss some additional accumulation. (I’ve started using more analogies in my life since starting my genetic counseling journey.  I promise I’ll work on getting better at them.  But you get the idea.)

I’ll end by saying these are my thoughts as an individual.  I welcome any and all responses.  And I’m going to quote from Senator John McCain’s statement today:

I think the world of them*. I know they are acting consistently with their beliefs and sense of what is best for the country. So am I.

*NSGC, its leaders, and all its members, of which I am one.

Thanks for listening.

Advertisements

SLA 2012 Info for Medlibs

I sent this out as a message through several email lists, but figured I might as well throw it up on the old blog for an easy Twitter link.  🙂

**Only on the blog bonus: my own schedule (missing only a couple of social/vendor activities), in case you want to be as cool as me: http://sla2012.sched.org/ultimatelibrarian**

The Special Libraries Association’s 2012 annual conference officially opens tomorrow, July 13th. If you find yourself in Chicago over the next few days, there are a few sessions that might be of particular interest to medical librarians and information professionals, including a panel on knowledge management featuring some of our medical librarian colleagues. (It’s not too late to register for the full conference or for just a day – visit http://sla2012.sla.org/registration/!)

If you won’t be in Chicago, you can still visit the SLA Planner and see the sessions and any uploaded handouts by visiting http://sla2012.sched.org/. And you can follow along from home with the Twitter hashtag #slachicago (https://twitter.com/#!/search?q=%23slachicago)!


Tuesday July 17, 2012 – Knowledge Management across the Health Care Spectrum 10:00am – 11:30am @ Convention Center, Room E264

The 2012 DBIO Medical Section program will take a look at the KM world within the health care spectrum. During the panel discussion, we’ll take a look at what knowledge management means within this field, hear how one medical librarian is playing a role in knowledge management at her organization, and learn how we can advocate for ourselves to take on knowledge management responsibilities. There will be plenty of time for audience questions and discussion. While this panel will focus on various roles in the health sciences, anyone interested in learning more about KM and getting involved in this new role is welcome to attend!

MODERATING: Amy Donahue, Aurora Health Care
SPEAKING: Barbara Jones, National Network of Libraries of Medicine; Carrie Papa-Schold, Wheaton Franciscan Healthcare; Lorri Zipperer, Zipperer Project Management
PRESENTED BY: Biomedical & Life Sciences Division, Pharmaceutical & Health Technology Division
SPONSORED BY: Springer, Rittenhouse


Sunday July 15, 2012: PubMed for Experts 11:00am – 12:30pm @ Hilton Chicago, Boulevard Room BC

Designed as an advanced class for experienced MEDLINE searchers, this hands-on session will highlight advanced PubMed techniques that can be used to conduct comprehensive searches. Attendees are encouraged to share difficult search experiences (both past and present) to discuss with the class. Participants are eligible for two MLA continuing education credits. *Please bring your own computing device; Internet access WILL be provided but laptops/iPads will NOT.

SPEAKING:Holly Ann Burt, National Library of Medicine
PRESENTATION HANDOUTS: http://www.sla.org/pdfs/sla2012/PubMedforExpertsHABurt.pdf


Sunday July 15, 2012: Using the TOXNET Toxicology Data Network 1:00pm – 2:30pm @ Hilton Chicago, Boulevard Room BC

This session is designed to convey the basics of searching the NLM’s TOXNET®, a Web-based system of databases in the areas of toxicology, environmental health, and related fields. Participants are eligible for two MLA continuing education credits. *Please bring your own computing device; Internet access WILL be provided but laptops/iPads will NOT.

SPEAKING: Holly Ann Burt, National Library of Medicine
PRESENTATION HANDOUTS: http://www.sla.org/pdfs/sla2012/UsingTOXNETToxDataNetHABurt.pdf


Monday, 7/16: Sixty Sites in Sixty Minutes 10:30am @ Convention Center, Room E451B

This wildly popular session will give you all sorts of new, useful and fun tools to take back home.


Tuesday, 7/17: Evidence-based Healthcare and the Cochrane Collaboration (Pharma lead; DBIO co-sponsor) 4p.m. @ Convention Center, Room E261

This session will provide insight into Cochrane’s purpose, scope, goals and processes as the global focus on evidence-based medicine and comparative effectiveness research intensifies, while also providing a “behind the scenes” look at the role of information professionals in the creation of these reviews.


Wednesday, 7/18: Division of Biomedical and Life Sciences Contributed Papers & Breakfast 8am @ Convention Center, Room E256

  • “The STEP (Safety and Toxicity of Excipients for Paediatrics) Database: International cooperation between US and European Paediatric Formulation Initiative” (Barbara Brandys, National Institutes of Health Library, National Institutes of Health, MD);
  • “Taxonomy Creation for AAAS by Vantage Information Services SM” (Jean Fisher, MLS, Vantage Information Services, PA);
  • “Retracted Publications: The Hidden World of Biomedical Literature” (Merle Rosenzweig, Anna Ercoli Schnitzer, Katy Mahraj, and Irina Zeylikovich, University of Michigan Taubman Health Sciences Library, MI);
  • “Collaboration, Innovation and Diversity: Keys to Building a Cost-Effective and High-Impact Biomedical Instructional Program” (Christopher Stave, MLS, Instructional Program Coordinator, Lane Medical Library, Stanford University, CA)

—–

Amy Donahue, MLIS, AHIP
Medical Librarian/Informationist
Aurora Health Care – Aurora Medical Center Grafton
975 Port Washington Road, Grafton, WI 53024
p. 262.329.1025
f. 262.329.1021
amy.donahue@aurora.org

Is there an app for that?

I need a tool.  Or rather, a doctor I’m trying to help needs a tool.  And I feel like it should exist, but I’m kind of thinking it doesn’t.  I’ve solicited advice from all the lovely medlibs I follow on Twitter, and have had a few suggestions, but I’m not sure 140 characters really lets me describe my need.  But I have a blog!  A not-oft used blog, but that’s an issue for another time.

So.  Our hospital system’s libraries provide a Table of Contents service.  I’m in charge of the ToC for Administrators, a monthly aggregation of the latest issues of journals relevant to administrators that we subscribe to the full text of.  As I’m sure many of you are aware, e-journals are not all on the same platform.  On my Admin ToC, there’s even a non-e-journal (I think they call them print?) that I have to post the .PDF copy of.  Here’s what the page looks like:

Table Of Contents for Administrators ScreenShotSo you click on a title and you’re taken to the most current list of articles for that journal, maybe on the Ebsco platform, maybe on Ovid…maybe even on the Gale Health & Wellness Resource Center *shivers*.  All the full text is available to employees, but of course there a multiple clicks involved, and you have to save PDFs, and what if you just want a nice set of the articles you want to read later?  Our doc is a a tech-saavy guy, he knows how and that he could spend the time saving everything he wanted to read later, but what if he wants to just circle the ones he’s interested in, then pass it on to his assistant (or me) to nicely package everything together?

Can he do this:

Journal 2 Screen Shot + Journal 1 Screen Shot   —–> folder—–>assistant/me?

Does that make any sense?  Any help would be appreciated.  Oh, and the app?  Yeah, bonus if this is something my doc can do on his iPad.  I’ve had some thoughts/suggestions:

  • Springpad (captures URLs, which don’t work because of authentication issues, but it does let you easily e-mail things to others, and you could always say “I want 1 & 2 from this one” instead of circling…)
  • Instapaper (I don’t this would really work at all)
  • Skitch (seems overly powerful for what we want to do, and isn’t an app)
  • BO.LT (pretty cool tool for capturing and sharing webpages, but the authentication issues again come up…)

UPDATE: after looking at Jing, I’m thinking this tool might be my best bet…but it’s still not an app.  Is there anything like this available for iPads?   

Hacks, tricks, and all other alternate work-arounds are also welcomed!  This is something of a last ditch effort, and I thank all of my readers in advance.  🙂

Getting to know you

Getting to know all about you…I’ve never actually seen all of the King & I.  Which is probably why I always think this song is in My Fair Lady, and which itself is odd because I love My Fair Lady and have practically the whole thing memorized, so you’d think I wouldn’t make that mistake.  And now I’m thinking about Rex Harrison, something I do quite frequently.   Unfortunately, we’ve already concluded that he doesn’t sing this particular song, but it fits today’s post better than “Why Can’t the English Teach Their Children How to Speak.”

Because “getting to know you” is the point I’m at in my relationship with my collection.  I have 64 books so far, but who’s counting? (It’s for statistics, I swear!)  That’s a pretty small number.  These 64 books were the books ordered for me by the Libraries Director, but from here on out, everything ordered will be coming directly from me!  And so I have a pretty special opportunity to know what I have, I think.  I’ve always been in awe of the librarians who know their collections inside out.  How do they do it?  I’ve known people in big academic places who can find you anything in their physical collections (and who did a pretty damn good job online, too).  History of Medicine folk are the best.  It’s not that big a deal to pull out the Vesalius, everyone knows you have that, but when you nonchalantly point to an old dusty thing that contains the home remedies of a local woman from the eighteenth century, I’m impressed.  If you’re one of them, care to reveal your secrets?  I’m guessing it involves something like a lot of time, and a mind like a steel trap.  I’d like some shortcuts.

But back to my own opportunity: while the books are cataloged at the big hospital, I get to process them.  This involves a lot of fun stuff like putting call number stickers on the binding, placing card pockets (yep, still have those!), and the oh so fun stamping of a certain page with “Property of” to thwart the theft of our expensive titles:

Book & Book Pocket Book & processing materials

And so I get to hold every book that will go on my shelves (once I get the shelves…) in my own hands.  I think that’s kind of nice.  Maybe next I’ll ask them out to dinner.  But that’s probably as far as I’ll go.  I don’t want Rex to get too worked up.

Professor Henry Higgins: Marry Freddy! What an infantile idea, what a heartless, wicked, brainless thing to do. She’ll regret it. She’ll regret it! It’s doomed before they even take the vow.”  (this closing quote worked a lot better before I remembered that whomever played Freddy did not sing Getting to Know You, but maybe there is a strange resemblance between him and Julie Andrews?)

One last pic: isn’t my little collection cute?  I love them all equally.  But the Dorland’s Illustrated Medical Dictionary most equally of all.

Books sitting on a counter

I blame the e-book

The ebook debate rages on  (a story on NPR this morning pitted a librarian against a professor on whether interactive book apps were actually books…the example was Dr. Seuss).  But they’re pretty standard in various forms in libraries and homes and universities and everywhere else and are obviously here to stay.  Better people than I have discussed them in the medlib world: the Krafty Librarian talks about usage, David Rothman helped catch me up on the Overdrive/Harper Collins battle, and Eric Rumsey provides the latest tips and tricks.

But I have my own bone to pick with ebooks.  You see, I blame them for the current state of my little library.

Am's Resource Center Library

Do you see any bookshelves?  Me, neither.  There’s actually a lack of furniture in general.  And you know why?  Because the vendor that outfits the libraries in our system has gone bankrupt.  Lack of demand.  Before you feel too sorry for me, I should reveal that supposedly they will be able to finish our (custom) project, but there’s a delay while they figure out the paperwork and get the bank to release the money to pay the installers.  But just in case, I’m taking suggestions.  A fireplace was brought up by one intrepid patron who stopped by (today was opening day!).

But in all seriousness, this does seem to be one little sign of the times.  And one I hadn’t really thought of, higher up in the food chain.  And not a bookseller.  But what interests me more is what this means for the hospital library space.  I’m all for the embedded librarian and I’m not particularly attached to any ideas of what a physical space should be, but I also think that the “library as place” concept has some worth.  It’s not a waiting room.  It’s not the computer kiosk in the hall environmental services has to stand up to check their e-mail.  It’s a little bit of an escape, and a headquarters for providing services, even when I’m out and about.  And so it becomes something of a physical representation of those services.  I’d like to think I could do my job without it, but I’m really glad I have it, and that the plans for it include a “professional corner” as well as a separate area that’s a little warmer and more inviting.  It kind of embodies me.  🙂

But first that furniture has  get here.  I’d be cool with a fireplace, though.

And to be completely fair, I should probably blame e-journals more than e-books.  Let’s have a moment of silence for the binderies.

I am Medlib

2 1/2 weeks ago I had my first day as an employee for a medical system.  Tomorrow, after lots of site visits and training, I will have my first day in my library.  Or Resource Center.  Whatever you want to call it, it’s the space that I was hired to manage and make valuable.  There are a few things making this evening feel like Christmas Eve:

  • This is my first “real” job.
  • I will be the first person working in this brand new library in a brand new hospital.
  • However, I will not be completely (forever) alone; I have an amazing group of fellow librarians elsewhere in the system to support me even as I am “solo” within my locale.
  • I am a hospital librarian.

I just want to focus on the first and fourth bullets for a second.  Because I want to come back to this post in a year and see how it’s going.  But as it stands right now, I’ve realized that this is what I’ve been working towards for the last 5-6 years and I’ve “done it”.  Maybe it’s weird to aspire to a job that put me in so much debt and doesn’t pay *that* much. but I put blood, sweat, and tears (lots and lots of tears) into this, and in the end, I’m pretty sure I’ve discovered that it’s worth it. I guess maybe i shouldn’t say that yet, since I haven’t actually had even a day in my space, but I do know that I have no regrets. And that was the most terrifying thing, through the grief that kept me from making friends through much of library school and then the years apart from people I love, that it might not be worth it. And I knew I wouldn’t know until I reached a certain point. That point is right now.  I think i did a pretty good job of living life, and if it really hadn’t been worth it and I had left the field, I would have been able to move on because I do have amazing friends and family who inspire and motivate me, and things I love doing outside of my career. But it is a an amazingly good feeling to be here and say I’m pretty damn happy to be a hospital librarian.  It feels right, you know?

And so tomorrow I will see if I have any furniture and start to document the life of a new medlib in a new library.  Things of more substance than the above personal “yes!” moment, like how much free stuff you can get from NIH.  And how to build a collection from nothing.  And thoughts on going to non-librarian professional conferences.  And how an iPad can be incorporated into a medlib’s daily routine…Okay, you might have to wait a few paychecks for that last one, but it’s coming.  🙂  And I’d love to have you along for the ride!

Triumphant return!

What could be a more auspicious rebirth for The (Ultimate) Librarian than my first day of work in my first professional role?  I think it’s pretty triumphant, anyway.  I’ve updated the look, refreshed my background story, and now it’s time for my first post in 4 years.  Although I’ve blogged elsewhere, for the Medical Libraries Association Annual Conference, the Midwest Chapter of MLA, and even on my very own wedding blog as I attempted to document my journey as a “green bride,” it feels damn good to be back home.

But I’m a tease.  I’m exhausted, I’ve only had the first of many days of new job orientation and don’t really know what I’ll be doing, and I just moved to a new city without my husband or cats where I’m renting a room that I have to access by ladder (okay, it’s actually really cool).  So this post is not much more than a promise to myself and to you to make this space into something more than it has been, and in the very near future.  Stay tuned for actual medical librarian content!

I can’t just leave it at that, though…So I’ll share my new organization’s values.  Because the people I met today have created a place that really embodies them, a place where I’m more than a little excited to be working.  Without further ado:

  • I believe every patient deserves the best care.
  • I believe in responsibly managing resources.
  • I believe in accountability, teamwork, and respect.

The first person was suggested at orientation, so that we all (from the very first day) understand that we are each responsible for making sure the values are upheld.  And yeah, that’s something I can definitely believe in.  And they are obviously applicable to my new role!  How do you feel about your institution’s values?

Goodbye for now

I should have done this a long time ago… My apologies for my absence. And now there will probably be an even longer one, but not to worry, I’ll probably be back. 🙂

So, over the past 6 months, a few things have changed.  I graduated, so I am now able to “officially” call myself a librarian.  Unless you have to actually work as a librarian to call yourself one…I have my MLIS, and I am currently working as a Content Indexer.  Basically, I help maintain the content on MSN Shopping.  I’m quite happy to have a job, and I’m enjoying the fact that I don’t have homework anymore.  I’m living in a new house with a slightly different set of roommates, and my fiance and I have set a date for our wedding (but it’s not until 2009).  That’s the news.  I’m kind of busy enjoying my life, and I don’t have the fresh ideas popping up from class discussions anymore (for now…).  So I’m going to put this blog more or less on hold.  If I have a mind-blowing idea that I want to be able to reference in the future, I’ll put it up here, but maybe don’t hold your breath.  🙂  I may start a new, more personal blog, but that will remain to be seen.

 So, for my final entry for the time being, I’m going to post an idea that’s perhaps not outstandingly original, but it has been floating on a sticky on my desktop for some time. 

 Most libraries have regularly scheduled staff meetings, correct?  I’ve sat in a few of these at a couple of libraries as a student staff member.  Changes in policy, library events, and similar topics seem like pretty standard meeting fare.  I’d like to see some time in these meetings where frontline staff (basically, ANYONE who EVER could have contact with library users) take a few minutes to share an interesting comment/reference question/feedback/suggestion that he/she responded to (along with the response) since the last meeting.  Just to start a dialog and to help others respond to similar inquiries/comments in the future.  Kind of a living wiki.  🙂  And obviously, someone could keep track of all this info on an actual wiki.  But my thought is creating just a wiki isn’t useful if no one is using it.  And sometimes it’s hard to see the point of one.  Actually having a conversation may draw people in that wouldn’t normally.  And it’s a little more informal; you could use these dialogs to track patterns and look for new areas of service and policy, or it could simply be a time to learn from each other’s strategies and maybe even share a sense of solidarity at some of the things that can come up…

If you know of somewhere this or something similar is done (doesn’t have to be a library), please share! 

Moving along, I wish you all the best.  Thanks for reading!  🙂  If all goes according to plan, I’ll be back, and maybe I’ll have stories to share about actually implementing some of my scattered ideas.  In the meantime, you can find me at some of my online hangouts:

До свидания, друзья!   

How to Successfully Host a Conference

Wouldn’t it be fun to have a half-day conference at your library/library school/other information setting? Think of the professional development, the showcasing of your staff’s/students’ skills, and just a different kind of program to brighten up your community’s day, week, whatever.

iEdge 2007 is a good example.
The 3 themes of the conference are information is people, information is social, and information is practical.

Keynote speaker: Stu Weible

Global Libraries Initiative (Darren Hoerner, Gates Foundation; Kara Fox, iSchool)
(Information is Practical)

  • The Internet is a crucial tool for the dissemination of information.
  • Why public libraries? Ideally situated, librarians are great moderators.
  • Strategy: Research, resources, and sustainability
  • What & Why: Need and Readiness are the criteria partnerships with other countries are based on.
  • Grant-making research process: global scan of countries, goal to target transitioning economies; next steps looking at individual countries and contract with outside research firm (using research template) and stakeholders in-country.
  • Challenges include finding effective means of research (in-country more effective), bias/neutrality (triangulate with other sources in and outside country), much of the information is difficulat to find or old.
  • Grantee research built into grant
  • Chile example: 100% of public libraries now have computers, help promote small business and agriculture.
  • UW Graduate Research Assistant role: contributes to research and evaluation at all phases, brings in an outside perspective.

Global Libraries Initiative (Darren Hoerner, Gates Foundation; Kara Fox, iSchool)
(Information is Practical)

I also attended a panel discussion called “Patients, Clinicians, Insurers or Administrators: Who’s Your User? Can User-Centered Design Work in Health Care?”, and I checked out the poster session.

It’s MHO that this kind of thing would work in any setting. Academic libraries could invite posters from their student bodies as well as staff who wouldn’t normally get a chance to showcase their work. Public libraries could invite a local celebrity to be the keynote speaker. Special libraries could open the event to everyone within their organization, generating publicity. And there’s overlap here; I don’t want to limit any of these ideas to any one “type”.

Anyway, probably not the newest thought ever, but something I’d like to tuck away for the future.

Thanks, and good job, iEdge! 🙂