Communing with a Giant on Cancer, Life

This past week I attended the Rainforest Writers Village with twenty or so other science fiction writers.  The resort where we stayed is on the southeast tip of Lake Quinault, adjacent to the southern border of the Olympic National Park in Washington State.  It was quiet, beautiful, and slow-paced—the perfect place to take a break from everything and focus on my writing.

After lunch the first day, I decided to take a meditation walk along the lakeshore in hopes of absorbing some of the abundant tranquility. When I walked this same path 14 months ago (December 2014), Washington was experiencing a drought. This year, we’d had our wettest winter EVER, and the level of the lake reflected the additional rainfall.  Tree roots normally anchored on the mossy bank now stood in a couple of feet in water.

The first hours of the retreat were graced with several downpours, but for the moment, the rain had stopped. I took deliberate steps along the soggy pathway, carefully placing my feet to avoid adding another fall to my medical file.  I concentrated on taking slow, deep breaths.  Gradually my thoughts came to rest in the moment.  I smelled the surrounding evergreens, felt the moist rainforest air, heard the enthusiastic creek swollen with runoff, saw a raven stepping carefully on puddled lawn.

I meandered past deserted trailer slots and a closed bathhouse to the end of the campground, where stood the World’s Largest Sitka Spruce Tree.  There I encountered a couple of other writers who were also taking a break from their labors.  We imagined the tree was lonely and had called for company.  Eventually, the others wandered off, leaving me alone with the tree, and my thoughts.

Despite hundreds of droughts and downpours, the thousand-year-old giant before me stood firmly anchored in the earth, continually adding rings to its impressive girth.  The diameter of its trunk exceeded twice my armspan, and the massive roots spread at least twice again as far.

Standing under its broad arms, dwarfed by its great size and age, I was struck by … Read more

Technology for Coordinating Care — #hcldr chat 10/28

Lung cancer and other acute/chronic health conditions require care teams with more than one healthcare professional, sometimes located in more than one care facility.  To provide the best care for the patient, these teams often must coordinate with the patient as well as caregivers, family members, care facilities, and community services.  How can technology platforms (like smart phones and social media) help with this process?

#HCLDR Chat will tackle this topic, Platforms for Community-Wide Care Coordination, in their next chat on Tuesday, October 28, at 8:30 PM Eastern Time.

I hope you’ll join the #hcldr chat and share YOUR thoughts on this important subject.  We’ll be discussing the following topics:

  • T1: What are the most important challenges patients, family members & caregivers face in coordinating care?
  • T2: What challenges do care teams (clinicians, lay health workers, managers) face in coordinating care?
  • T3: What are examples of where social media and other technologies have supported care coordination?
  • T4: How can social media & other technologies help coordinate care for publicly insured, rural & other underserved communities?

I (@JFreemanDaily) will be participating as a guest in this chat, along with other members of a panel who will be presenting at the upcoming Workshop on Interactive Systems in Healthcare (WISH) 2014 which will be co-located with the American Medical Informatics Association (AMIA) Annual Symposium on November 15, 2014 in Washington, DC.   The responses gathered in the #hcldr chat will be included in our WISH panel discussion.  The other panelists participating in the chat are:

  • Katherine Kim, PhD, MPH, MBA (@kimkater): health informaticist, researcher and Assistant Professor at University of California, Davis
  • Charles Boicey, MS, RN-BC, CPHIMS (@N2InformaticsRN): Enterprise Analytics Architect for the State University of New York, Stony Brook Medicine
  • Susan Hull, MSN, RN (@SusanCHull): nursing executive , founder and CEO of WellSpring Consulting
  • Anna McCollister-Slipp (@annamcslipp): diabetes epatient, co-founder of Galileo Analytics

My Take on This

This is a topic of great interest to me.  I can see many care coordination needs that might be addressed with technology platforms.  Here are some snippets from my own experience as a lung cancer patient.

Having multiple care providers at different facilities is a common situation with lung cancer.  When I was undergoing my first line of treatment, I met regularly with seven healthcare providers in four different facilities:  a pulmonologist and infectious disease doctor in a major medical center, a medical oncologist and infusion nurse in a local clinic, a  radiation oncologist and nurse in a different local clinic, and a contractor that provided supplies for my PICC line.  Even though the doctors all belonged to the same medical center, each facility had different scheduling software and limited or no access to my electronic medical records at the other facilities.  Care coordination was mostly done by telephone and fax.  My husband and I tracked my daily appointments on a wall calendar at home.  If the infusion nurse giving me my chemo needed to ask a question of the radiation oncology nurse who has seen me when I received my radiation treatment 30 minutes earlier, they played phone tag in between patients.  Having a common platform accessible to all team members that showed my appointment schedule and treatment notes and allowed even brief instant messaging (e.g., “give Janet 1L IV fluids after her chemo today”) would have been very helpful.

Having a device that could display my current health conditions and meds, then connect an emergency medical tech or doctor to my oncologist (even when out of cell phone range) would be pretty nifty.  Currently I keep a two-page summary of my lung cancer treatment history and contact info with me on a USB Medic Alert bracelet when I travel.  This presumes whoever finds me unconscious has a PC with a USB port and a PDF reader handy. My epatient friend Casey Quinlan had her medical record access info tattooed as a QR code on her chest.

I have learned the value of keeping a complete set of my medical records at home in case I need them.  While I can access some of my medical records online at the two medical centers where I currently receive care, right now I can only see lab results, and (at one facility) scan reports.  When my tumor tissue underwent mutation testing at an NCCN facility, an oncologist’s office at the same facility couldn’t find the test results without my sleuthing to find a specific number on a faxed copy of the test report–fortunately I had requested one previously.  There’s GOT to be a better way to transmit current medical records rapidly between facilities than faxing or emailing scanned documents!

Metastatic lung cancer patients like me–especially those who are eligible for targeted therapies, aggressive treatment, or clinical trials–find second opinions can be life saving.  When a patient takes a turn for the worse or a clinical trial has limited openings, the second opinion may occur on short notice.  For me, pursuing a second opinion for my lung cancer today would mean going to a 3-foot-deep file cabinet drawer and gathering a stack of CDs containing relevant CT, PET, and MRI scans and other medical records (clinic notes, pathology reports, lab results, chemo summaries, radiation treatment summaries, etc).   If I were to include all the records I’ve generated in over three years of lung cancer treatment, the stack of CDs would be over 4 inches thick.  The radiology scan files are too big to be transmitted electronically and still preserve the ability to view the data, so I’d take those CDs with me.  All those other records provided by my care center exist as a few unsearchable pdf files containing hundreds of images of hardcopy documents.   For those records, I’d save the second opinion doc from having to read every single page of the huge file; instead, I’d ask which files they need to see, and print hardcopies to take instead (I keep the most important of these in a 3-ring binder).  If I had a week, I could request CDs of the specific files from the medical records department and wait to receive them via snailmail.

Some patients may use medical devices such as my CPAP machine that generate medical data useful to the care team.  However, it may be difficult or impossible to pass that data to a healthcare provider in a different location, or even access the data if the device employs proprietary designs.  My CPAP has a removable SD disk that can be read by most card readers in PCs.  However, I’d have to download the software to read it, and I can’t capture the data I read so I can transmit it to anyone.  “Interoperability” doesn’t really exist with medical devices yet.  I may be hallucinating from too much chocolate, but I’d love to see a platform that provides an interface to different medical devices and electronic medical records so they can network the way my Fitbit shares data with my LoseIt! diet app on my smartphone.

I’d also love to see care coordination solutions designed for those who do not have reliable access to the Internet.  Not all patients live in areas where broadband Internet or cell phone coverage is available, and not all patients can afford to pay for Internet service or devices that access it.  Yes, they could go to the library, but who wants to put sensitive personal medical info on a screen and unsecure computer for everyone to read?

Speaking as a system engineer, creating a secure technology platform that meets all the requirements and desirements without causing more complications in the already messy digital medicine world will require out-of-the-box creativity.  Maintaining data security and HIPPA privacy is essential.  Forcing already overloaded healthcare workers to use yet another interface, or forcing facilities to invest in a new standardized medical records system without providing the funds and training to implement it, are both non-starters.  The motivation for change will have to come from demonstrating that a new technology platform improves care quality and access, reduces cost and workload, and is readily adopted by patients and carers alike.

The first step in solving this problem is to capture the requirements; I hope the #hcldr chat on 10/28 will contribute to this effort.

Care Coordination Challenge graphic (UC Davis)
Image credit: UC Davis Betty Irene Moore School of Nursing

Making Space and Losing Memories

Today my college and grad school textbooks become property of Friends of the Library. I hope they find another loving home while raising funds for library activities.

The books were cleared out to make space for exercise equipment, which helps me combat the side effects of cancer treatment and helps other family members stay healthy. I’m not using the books, and if I hold onto them too long, they’ll become obsolete and useless to anyone else (if they haven’t done so already).

I know I will never have cause to do complex variable calculus, satellite design, digital signal processing, systems engineering, microwave remote sensing or data fusion again. However, it’s still hard to let go of those books. It’s like shutting a door on twenty years of my life.

Part of me fears that when my cancer progresses and my brain gets fuzzier, I will forget my years of aerospace engineering. Not all of it was good, but lots of it was fun. I’m feeling anticipatory grief. Guess I need to find a less bulky way to stimulate my recall of those times.

Just as I have to clear physical space to help my physical body cope with lung cancer, I must clear mental space for new activities that support me in this phase of my life. Now writings on cancer genetics, cell biology, and new treatment discoveries fill my thoughts and give me hope.

The decluttering continues.