UPDATED FOR INFO BLOCKING rule: UCHealth’s 16 year OpenNotes Journey (and a ukulele song)

Since the passage of the 21st Century Cures act and the INFORMATION BLOCKING rule, I’ve gotten a ton of questions about our experience with Open Notes and Open Results. AND A UKULELE SONG

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Image courtesy of Healthcare Informatics

OCTOBER 2020 UPDATE. 

In this update:

  1. A ukulele song on Open Notes! What?! Read to the end…
  2. Our current interpretation of INFO BLOCKING rules and our current plans
  3. Links to important tip sheets that you can use/share

Since the passage of the 21st Century Cures act and the INFORMATION BLOCKING rule, I’ve gotten a ton of questions about our experience with Open Notes. Followers of this blog the Undiscovered Country will have heard this before. However, if you’re new here, welcome! I’m updating my original post from 2017. This now will include:

Important Links

  1. Link to my post on INFORMATION BLOCKING and the 1-page WHY plus 4-page HOW/WHAT that we are circulating at our Health System, affecting 6000 docs.
  2. Link to my post on HOW TO WRITE AN OPEN NOTE, with language suggestions.

UCHealth’s INFO BLOCKING settings

FYI, in regards to INFO BLOCKING, there are tons of nuanced decisions healthcare organizations are making, since the 1200 page rule still leaves some specifics quite vague, and the often-rumored FAQ that will clear up some of the vagueness is not here yet (less than 30 days until rule takes effect!). Here are our (interim) decisions at UCHealth:

  • All outpatient, emergency dept, urgent care provider progress notes will release immediately upon signature to the patient (already doing this)
  • All clinical notes associated with those visits (MA, RN, technologist) notes will also release immediately
  • All hospital progress notes will release to patients upon signature. This will include: H/P, daily progress notes, consult notes, operative reports, discharge summaries.
  • All medical student notes that are cosigned by physicians and used for billing will be immediately released. We are in discussions about the remainder of medical student notes that are NOT part of the legal medical record.
  • All resident and fellow notes will release immediate upon attending signature
  • All nursing and clinical notes that can be considered progress notes will release upon signature
  • NO psychotherapy notes will release to patient (they are not stored in our EHR)
  • NO notes that may be involved in legal, criminal or similar proceedings
  • NO notes that may ruin research randomization if revealed to patients
  • SOME of our psychiatry provider progress notes already release to our patients. Three of our 8 psychiatry clinics committed to Open Notes in 2017 and have had no issues. We are still working through this, in discussions to release more behavioral health progress notes (psychiatry, psychology, social work, case manager, others) to patients. There are some concerns about the possibility of risk to staff for patients reading some of these notes in real-time. Stay tuned!
  • All progress notes, inpatient and outpatient have a “DO NOT SHARE” button where providers can individually opt a note out of sharing with patient if it is deemed a risk. Our share rate is typically in the 90% range.
  • We already release all lab results immediately to patients, including sexually transmitted diseases, hepatitis B and C, etc.
  • HIV is on a 7 day delay and will move to immediate
  • We already release all plain film radiology and ultrasounds immediatelly.
  • Complex radiology: CT/MRI/PET are moving to immediate
  • Pathology, Cytology is moving to immediate.
  • We plan to manually release a handful of genetic tests, including Huntington’s disease only AFTER discussion with the patient. The remainder are moving to immediate release.
  • We have over 850,000 patients on our patient portal, so these settings will affect a great many patients.

Our 16 year journey to Open Notes

Thanks to @RajivLeventhal of Healthcare Informatics for a nice write up of our Open Notes work at UCHealth. The journey to “overnight success” can sometimes take a decade or so. To paraphrase Machiavelli: “Nothing is so difficult as Change in a large organization, as your proponents are, at best, lukewarm, and your detractors have ALL THE PASSION IN THE WORLD.” I discuss some of my hard-won lessons in Change Management on the journey to OpenNotes.

Link to story (March 16, 2017):
UCHealth’s OpenNotes Journey: From a Few Docs to Enterprise-Wide Acceptance

Original Research in 2001

The original research on SPPARO (System Providing Patients Access to Records Online, conducted in 2001, 10 years before the official, and better-named Open Notes initiative) is still available:

Ross, Lin, et al. Providing a Web-based Online Medical Record with Electronic Communication Capabilities to Patients With Congestive Heart Failure: Randomized Trial. J Med Internet Res. 2004 Apr-Jun; 6(2): e12.

Earnest, Lin, et al. Use of a patient-accessible electronic medical record in a practice for congestive heart failure: patient and physician experiences. J Am Med Inform Assoc. 2004 Sep-Oct;11(5):410-7. Epub 2004 Jun 7.

And … a song!

A ukulele song on Open Notes: Doc Prudence.

CMIO’s take? It has been a long time coming. Information Transparency for patients is the RIGHT THING to do. For myself, it was a 16 year journey from our first research studies, completed in 2001, until system-wide adoption of Open Notes for clinics, emergency depts and hospital discharge summaries in 2016. For others it is hitting them all at once here in 2020. It is a better place we are going to. In the meantime there is a lot of work and culture adjustment until we get there. Good luck to all of us.

You’re gonna release WHAT? WHEN? Info Blocking vs Info Sharing

Info Blocking means inpatient and outpatient progress notes released immediately to patients, along with lab results, CT/ MRI/ PET scan results, pathology results. Immediately. Ready?

My 1-page White Paper on WHY and 4 following pages on HOW/WHAT

LINK TO UCHealth’s INFO BLOCKING WHITE PAPER

What is Changing

The 21st Century Cures Act has an Information Blocking regulation that addresses the concern that some health systems or facilities delay or block patient information from other treating health systems, or from the patient. Of immediate concern to this CMIO is the impact this rule has on our health system, to wit:

We are already an Open Notes organization, since 2016, releasing outpatient provider progress notes to patients immediately upon signature. This applies to emergency department and urgent care notes, also to hospital discharge summaries. We’re happy with this, and proud to lead the charge in Colorado for information transparency. Same with immediate release of the vast majority of lab test results.

HOWEVER, we still delay some results 4 days, 7 days or 14 days depending on category (see above). The new INFO BLOCKING regulation stipulates that systematic delays like this will Violate the Info Blocking rule, and that the potential penalty for such delay is $1 million.

Wow.

This is great news for patients and patient advocates; they have long stated the maxim: “Nothing about me without me.” I love this idealism. Practically? We have struggled with how to make this happen. Now the feds have conveniently stepped in with a mandate. This makes the conversation easier.

Our big struggles ahead

  • Teach our inpatient providers to write notes that are ready for patients to read each day they’re in the hospital.
  • Teach ALL our providers how to anticipate patient concerns and the range of possible results coming from pathology (biopsies and PAP smears and other results that may show cancer or severe disease). Same with complex imaging like CT scans, MRI’s, PET scans, mammograms. Same with lab results that may show genetic variants, like Down’s syndrome.

How I made this

Beyond the specifics of the INFO BLOCKING rule, this also illustrates the value of Form Factor and Communication Strategy. My mentor always taught me: if you write a white paper executive summary, every additional page beyond one side of one page cuts your readership in half.

So, for my white paper, I have written a ONE PAGE summary of WHY this is important and what action is needed. For those who just need “at a glance” the color grid in the center tells the story of exactly what is changing. And because data alone does not change minds, the call-out box at the bottom includes a few quotes from selected leaders, telling a brief story.

Finally, if you get to the end of the page and are interested in doing something, I have 4 more pages of HOW and WHAT to take you to the next level.

This, COMBINED WITH a road show, where I am going to every major physician leadership meeting, is how I’m getting the word out. There is, of course, much more work to do at the individual provider and manager and service and clinic level, but I’m trying to give everyone a running start. There’s not much time left.

CMIO’s take? We all have hard work ahead. This is a federal mandate, so 4000 hospitals, countless health systems and clinics will be facing this as well. The link to my white paper here (and above) is my contribution. I hope this helps you get to the right place with this regulation AND with doing the right thing for our patients.

Telehealth World: CT finds ukulele song partners!

Telehealth Ukulele Song!

Thanks to George Reynolds, CMIO and CIO extraordinaire, who put together a dream team of CMIO leaders to facilitate a course for up-and-coming leaders in the area of informatics. This year, CHIME (the College of Healthcare Information Management Executives) opened up the future-CMIO candidates for this course, to nurse, pharmacist, and other clinical informatics candidates. Our 30 participants this year made this 6-week, 2-hours-live-with-weekly-homework a blast to teach and discuss. That course concluded this week. Here’s how to sign up for future courses through CHIME:

https://ignitedigital.org/clinical-informatics-leadership-boot-camp-digital

We tackled: governance, high performance teams, creating value, leading change, and other topics.

And of course, what would an informatics session be, without some ukulele. Thank you to Amy Sitapati from UCSD, Brian Patty, former CMIO at Rush, and George Reynolds, former CMIO and CIO, and now with CHIME, singing with me.

CMIO’s take? Make music! Make art! You can clearly see, we are not gonna win any awards with our skills, but we sure had a great time putting this together. I am grateful for colleagues willing to stick their necks out to sing with me.

Czernik: Counter-intuitive way to connect with the patient (Annals Internal Med)

My awesome colleague Zuzanna Czernick and collaborators have written a brilliant piece about the EHR. She used a CT scan image with a large pulmonary abscess to get the attention of an otherwise hostile, disengaged hospital patient.

Link to article Annals of Internal Medicine : https://annals.org/aim/fullarticle/2738161

My awesome colleague Zuzanna Czernick and collaborators have written a brilliant piece about the EHR. She used a CT scan image with a large pulmonary abscess to get the attention of an otherwise hostile, disengaged hospital patient.

The EHR, although widely disparaged, is also a wonderful tool to bring medical data alive for the patient. She offers a few guidelines on how to most effectively create the trusted “triangle” of provider-patient-computer:

  • Prepare
  • Setup
  • Educate
  • Chart together
  • Review

There are so many opportunities to connect with our patients; why not bring up a screen to show an image, a result, a graph, a note written by a consultant that illustrates and answers a question.

CMIO’s take? Yes, we need counter-intuitive (and soon perhaps simply intuitive) stories about the benefits of a modern information system in caring for patients. Thanks, Dr. Czernik!

Social Distancing reduces more than just COVID-19: Guest Blog (Dr. Eric Glissmeyer)

Dr. Glissmeyer, informaticist, Utah, notes that emergency department visits plummeted in March and are much slower to rebound. Why?

During many winter seasons, pediatric hospitals are bursting at the seams. RSV, Human Metapneumovirus, and other respiratory viruses like non-SARS CoV-2 Coronavirus cause significant disease burden sending pediatric specialists scrambling to find space to admit children with bronchiolitis who need supplemental oxygen and other forms of respiratory support. Patients with the same viruses will “double bunk” in single rooms to receive life-saving care. 

2020 has been very different. COVID-19 was announced to have arrived in Utah March 6, 2020. March 13 2020 Utah schools announced that beginning March 16 online home learning would begin and Saturday March 14 the first case community spread of COVID-19 was confirmed. March 16 the Utah Department of Health issued a public health emergency limiting some services and businesses and Intermountain Healthcare and University of Utah Health announced elective and non-emergent surgeries and many non-urgent ambulatory services would be canceled. March 27 the Governor issued a “Stay Safe, Stay Home” directive. Social distancing during these months, via economic and public gathering restriction, was the only public directive. Mask wearing in Utah did not become widely encouraged until July 2020.

As a result of these social distancing measures, we have witnessed a dramatic decrease in infectious diseases. The following data are from germwatch.org and contain data of common infectious disease prevalence in Utah, as identified by testing performed at and sent to Intermountain Healthcare labs, clinics, and hospitals.

Utah disease prevalence, tests performed at Intermountain Healthcare labs
Group A Strep dropoff quicker in Spring 2020

We have seen a drop in Emergency Department census that is unprecedented. We attribute this change to the decrease in circulating viruses, commonly spread bacterial pathogens and different healthcare consumer choices. In over 15 years, we have not seen ED volumes in the low ranges we are consistently seeing them now. 

Even as many economic restrictions have lifted in recent months, ED census remains lower than previous. At this point, we are uncertain which of the following influencers are playing roles, if all, or others?

  • Health care consumer choices (avoiding health care)
  • Social distancing reducing disease transmission
  • Mask wearing reducing disease transmission as social distancing/economic restriction has begun to lift

Emergency departments are a clinical service entirely dependent upon what is referred or self-referred to them. Yet they are a critical part of the healthcare system for unexpected, emergent care and as a venue for coordinating complex care.

Unprecedented dip in ED visit volumes, Spring 2020

We are seeing an apparent, but slow, increase in ED census over the past 3 months. Much slower than the stock market rebound 😉

July 2020 Daily Census Range: 57-92 July 2019 Daily Census Range: 79-120

Our hospital and others around the country have been bursting at the seams with seasonally variable infectious diseases like RSV and influenza. We now know that social distancing behaviors that decrease disease transmission can have a significantly decrease disease transmission. Data from the Southern hemisphere indicate that influenza season may be better than previous years, perhaps because of societal behavioral changes.

-Eric Glissmeyer, MD
Associate Professor, Department of Pediatrics, University of Utah
Division of Pediatric Emergency Medicine, University of Utah
Medical Director, Care Transformation Information Services, Intermountain Healthcare

EHR v Covid-19. Telehealth after 6 months at UCHealth

Six months into pandemic, what is happening to telehealth visits at UCHealth? Inquiring minds want to know!

Here we are, data dilettantes, on our long journey into the unknown.

At the prompting of online colleague John Lynn, we look back at telehealth usage at UCHealth in the past few months. The above graph depicts January 1 to present, the curve of in-person visits at UCHealth (purple) and telehealth visits (cyan). You see that telehealth visits temporarily outpaced in-person visits.

First of all, I feel very sophisticated for writing “cyan” instead of my first (caveman-male) instinct “blue-ish”.

Second of all, notice the curve above compared to our evolving curve from March, 5 months ago (remember, those purple divots are from Thanksgiving and Xmas holidays):

Be careful how you extrapolate, right? Based on this original, one would have thought “Holy Smokes! Telehealth is going to rule the world in a few more weeks!”

And one would have been wrong.

So, now it comes upon us Armchair Data Scientists to hypothesize: why? Why did the curve do what it did? Well, our first external data point is: Colorado Governor’s Safer-At-Home order expired on April 26. On the top graph, this corresponds to the day our 2 lines cross in April, with in-person visits rising again. This also corresponds to our surgery clinics opening up again to see patients.

Averaging the last few weeks of data, we are seeing about 8000 telehealth visits vs 60,000 in-person. Or about 13-15% of appointments being conducted by telehealth. REMEMBER, this is unvalidated data, so, take with some salt.

What have we learned? From anecdotal evidence, I have heard from quite a few patients (most of mine are over 65) that they prefer in-person visits when possible, although telehealth has been “acceptable” when fears of contagion are high. Also, much of internal medicine requires blood testing, vital signs monitoring, examination. Also, I’m finding that non-verbal communication, although “acceptable” via telehealth (tone of voice, body language), it is much richer in-person.

Even when we were conducting 2/3 of clinic sessions exclusively by telehealth, our in-person clinic slots were full, and our telehealth clinics routinely had open time slots. Now that we are scheduling 75% in-person, all our in-person slots are full, and our telehealth slots still sometimes are open.

It will take some intrepid ethnographic researcher to pull interesting trends out of this, as I’m hearing from other parts of the country that telehealth visits are preferred to in-person. Is this: geography and distance needed to travel? Is it the rarity of the specialist’s expertise? Is it access to surgeons? Is it the (gasp) lack of skill of the telehealth provider (please, no)?

We are also still struggling with CMS (Medicare) regulations that, for example, for home vital signs to be “acceptable” for quality reporting, either the MA or the provider MUST view the actual blood pressure from the display of the machine over the video link, or view a printout from the machine, otherwise it “doesn’t count.” Hmm. I get why administrators want good data provenance (proof of authenticity), but isn’t telehealth hard enough? Why make it even harder for patients and docs? Who is going to be so motivated to PAY their co-pay for a telehealth visit, have that visit, and then LIE about their actual blood pressure reading at home, so that they “look good” for the doc, or the doc can “look good” for the regulators, payors? Ridiculous.

Nevertheless, our pandemic / telehealth story evolves. With the fall approaching, schools reopening, flu season coming, watch this space for what happens next.

Things are briefly, perhaps, not as dire as in March and April, in Colorado.

CMIO’s take? Telehealth was gangbusters in March, April, and is now settling down to 13-20% of total volume of clinic visits. We are back to 95% of original clinic volumes (in person plus telehealth together), so there are still some patients who haven’t returned to see us. And, although we have learned a lot, I think we still haven’t optimized “best practice” on when to use telehealth with patients. I think there are still some adjustments and opportunities out there. Let me know in the comments what you’re seeing!

My Failure Resume, redux

Well, it is time to update my resume. It has been a year, I have failed at more things. I’ve read more failure resumes, and I like some of the newer ideas, for example, listing your NON-skills. I’ve added mine.

One idea for brave souls willing to try, is to submit both your Regular CV / resume AND your Failure resume to your next job interview. Here are 1 page versions of mine (REGULAR resume – 1 page / FAILURE resume – 1 page).

And, wouldn’t you know, the most popular post on this blog, after 3 years of weekly writing on aspirational topics in informatics?

My original Failure Resume. Go figure.

I love some of the writing out there on Failure Resumes:

  • Stanford Engineering: “come to terms with the mistakes … made along the way and … extract important lessons”
  • Forbes: Of 10 job applications, received 0 responses to traditional resume, but 8 responses for a traditional resume PLUS a failure resume.
  • Inc.com: why to encourage your employees to make a failure resume.
  • Even Einstein struggled: a scientific paper on how describing Einstein’s struggles to science students increased students’ hopefulness and engagement with science class.
  • ScienceAlert.com: A CV of failures is an entertaining and instructive read

CMIO’s take? I’ll be teaching an Informatics Leadership course soon, and will expect all our participants to write a one-page Failure Resume. Join us!

EHR v Covid-19: MDPOA (power of attorney) & Advance Care Plans and the Covid BUMP

Full open-access paper here. https://preprints.jmir.org/preprint/21385/accepted

What I love about working in an academic health center is the luxury of being surrounded by people smarter, and more hardworking than I am. Here are Drs. Portz and Lum analyzing our data on the capture of patient’s Advance Care Plans – ACPs (including the Medical Durable Power of Attorney MDPOA) and other documents online via our patient portal.

We believe we are among the first in the country to offer the ability for patients to complete this online and designate a medical decision-maker in the event of their incapacity. Furthermore, we now accept photos of documents (easy and convenient via our patient portal app integrated with a smartphone camera — hooray modern tools for modern medicine) into the patient chart, and can see signatures, names, contact information, and details of MDPOAs, Living Wills and other ACPs.

And, during the anxieties of the pandemic, we had a significant uptick in patients completing the MDPOA and uploading images.

CMIO’s take? Another publication for our smart colleagues — good. Better patient care — great.

EHR v Covid-19. Taiwan, EHR and effective pandemic response leads to economic growth

image from Statnews

https://www.statnews.com/2020/06/30/taiwan-lessons-fighting-covid-19-using-electronic-health-records/

It is fascinating, inspiring (and disappointing) to see effective responses to the Covid pandemic from other countries. Great partnerships and effective connection of governmental leadership, industrial production, and healthcare information can combine to combat the pandemic.

Taiwan has had only 446 cases and 7 deaths, for 24 million residents, since the start of the pandemic, despite their proximity to, and the frequent travel and many flights to and from China.

Dialing in to an Aging Parents Telehealth Visit… Why aren’t more of us Doing it? (Guest Blog: Glenn Sommerfeld)

I forgot about my father’s memory and neurology clinic visit even though I had promised to go down to Denver with both of my parents to help them navigate the complex world of healthcare four months before.  A lot changed in those four months, most notably COVID-19 swept across the world and made its way into the US.  The pandemic placed my aging parents at a greater risk if they contracted the virus while traveling from Fraser, Colorado to Denver and my work schedule was beyond capacity as I added Federal and State COVID-19 reporting coordination to an already full project portfolio.  How could a take a day and a half off work?  How could my parents stay safe?

Telehealth and Rural (Mountain) Living

I decided to move on from my first health care job in neurophysiological monitoring to acute care in 2011.  I also wanted to move to the mountains of Colorado.  My parents already moved from Colorado Springs to Fraser, just outside of Winter Park, Colorado.  Yampa Valley Medical Center brought me on as a quality analyst before they were part of the UCHealth system.  After moving to Steamboat, I realized how remote and isolated Steamboat Springs, Colorado was from Denver and the other “Front Range” cities in Colorado.  Here are some fun facts about driving from Steamboat for medical care:

  • Steamboat Springs to University of Colorado Hospital and the Anschutz Campus
    • 169 miles
    • 3 Hours and 10 minutes if traffic is good
    • One major mountain pass (or two if Eisenhower Tunnel is closed)
  • Steamboat to Poudre Valley Hospital
    • 159 Miles
    • 3 Hours and 21 minutes if traffic is good
    • Two major mountain passes or the choice to leave Colorado, go to Wyoming and drive back into Colorado so you only have to deal with one major mountain pass (adding on 30 more miles)

Many specialists come up to mountain communities on a rotational basis.  However, this may be once a month and possibly less frequent.  Telehealth is the obvious stop-gap for patients in rural and mountain communities that need specialized care.  A barrier to telehealth visits as Dr. Lin has mentioned in his blog has mostly been the providers.  However, with social distancing and with CMS lifting restrictions on reimbursement for telehealth, providers quickly adopted telehealth to keep revenue streams flowing for their practices.

Telehealth and Telemedicine Expansion and Deregulation

Telehealth and telemedicine rules and regulations relaxed at the start of the COVID-19 pandemic.  Now is the time to figure out how else to utilize technology to improve healthcare delivery.  Now is the time for innovation and policy reform.  So, how can telehealth help patient advocates and family members?  Could it be the answer for me and my dad’s visit?  Will it work for others in an urban setting or family members that are geographically separated?

Being a Patient Advocate Remotely

Before the pandemic, I had planned on taking a day off of work to drive down to Denver to accompany my father to an appointment at a neurology clinic.  This appointment transitioned to a telehealth visit following the outbreak.  I considered making the two-hour drive from Steamboat Springs to Fraser to be with him for the appointment.  After all, I would generate a net gain of two and a half hours from not having to drive all the way to Denver.  In a moment of clairvoyance, however, I decided to find out if I could join remotely.  After working with a few key stakeholders at UCHealth, we discovered that if my father gave me access to his My Health Connection account, I could join the same way he would for the remote visit.  This access also allowed me to review my father’s medications as the provider discussed them with my mom and dad and access the summary notes from the visit, so I could discuss treatment options with him and my mother at a later time.

The Visit (that’s me at the bottom, by the menu bar)

It was strange to know that I would be on a video call with my parents, but to be on the phone with them as well, ensuring that they could log on.  My wife and I have discussed the shift in caring for both sets of aging parents, but this was the first time I needed to support them on multiple fronts.  First working with them on technology and second being a health advocate.  The visits felt distant, yet at the same time normal.  The medical assistant greeted us virtually and started the intake process.  Dr. Zachary Macchi jumped onto the call about five minutes in and reviewed history and started the evaluation.  About twenty minutes into the call, Dr. Samantha Holden was able to join as well.  In the span of twenty minutes a total of six people (including my father) were working together.  Had we all gone down to Denver together, this may have been the same outcome.  However, Dr. Macchi joined the call first to help Dr. Holden.  He stated right away that she would be able to join us, but had other commitments.  My guess is that if we were in a traditional setting, we would have waited an extra 20 minutes but telehealth gave the flexibility for coverage.  Telehealth has its limitations.  My father had difficulty following the motor skills test.  We were unsure if it is his motor function or his ability to follow a two dimensional image in the three dimensional world.  For this and other reasons, everyone agreed on an in person visit three months following the virtual visit.

Just the first step… what are the next.

This visit made me realize the opportunity for telehealth in the patient advocacy realm.  While telehealth offers a convenience for the patient, it certainly helps with obstacles that patient advocates face.  I am lucky to live just a few hours drive from my parents.  If I lived outside of Colorado, I doubt I would be as involved in their care.  However, we now have the tools to improve care coordination between family members.  Our first step needs to be promoting the technology to allow for remote patient advocacy.  However, we could take it even further.  What if we could have an MA set up a camera during an in-clinic visit so the advocate (or family member) could join the visit if they lived too far away to join in person?  What are the other ways to utilize telehealth for family members and patient advocates?  Will CMS go back to restricting reimbursement for telehealth?  Time will tell for these questions, but we need the health care community to (dare I say) advocate for telehealth and the access it can bring for patient advocates.

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Guest Blogger Glenn Sommerfeld (thank you!)