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A Missing and Ignored Patient Narrative

Posted on February 24, 2017 I Written By

Healthcare as a Human Right. Physician Suicide Loss Survivor. Janae writes about Artificial Intelligence, Virtual Reality, Data Analytics, Engagement and Investing in Healthcare. twitter: @coherencemed

Sometimes I feel like the discussion of the patient narrative and open notes make me want to scream.  Step away from the new Health trend and back to improving access for every patient. Patient Experience and specifically Patient Narrative has been a theme of the HIMSS healthcare conference this year, from patient data and records to open notes and patient advocates. I have to admit- I love watching what people have done and what companies think of.

It reminds me of my German class on the Literature of the Holocaust. Our professor stood up and introduced the Holocaust as unique because the German Jews could read and write, so they had records. Without records, the voices of countless have been lost. Their voices died with them. Patient Narrative is similar. It’s teaching us so much about better workflow and records and getting better outcomes. Max Stroud gave a great presentation about her sister’s experience with lung cancer and managing patient records. They both admitted that it was difficult for them despite being well educated and knowledgeable about healthcare.

At HIMSS everyone looks at shiny new products with novelty pens and some alternate universe where it makes sense that we all need another plug in to our electronic medical record to really “make a difference” for patient health.

Right before HIMSS some of my late husband’s medical school classmates came to visit me and go to ongoing education in Park City. I asked them what they thought about patient involvement and one of them discussed the reality of emergency room care in impoverished areas.  They discussed losing faith in patients and how to deal with trauma patients. I remember the jokes about drug seekers. I told them about being at dinner in suburban Utah when an acquaintance casually mentioned we should do Molly on our way to yoga. The doctors I told laughed it off and said Molly really wasn’t that serious. Those narratives aren’t on our health records and the healthcare system is hemorrhaging cost with its lack of ability to treat them. Patients in some rural areas have access to care issues that telehealth doesn’t always bridge the gap for.

Is patient narrative just the next buzzword so we can distract ourselves from poverty and violence and human trafficking and corporate identity theft? Are we just talking louder to drown out the patients that healthcare is failing? Not every company or hospital group can afford to go to HIMSS. Participants have relatively good access to care and a lifestyle of relative privilege. Exhibitors are selling something and it certainly isn’t about the unglamorous parts of medicine.  The undocumented patient narrative will never climb the walls of privilege in a system with an entire industry of payor complexity and government regulation.  There were so many companies and even in telemedicine in rural areas and patient narrative presentations I didn’t see the patient stories like the ones I heard from my friends.

We are distracting ourselves from the complete lack of availability of care for economically disadvantaged patients by geeking out over the shiny data with our fellow zealots.  We can learn new things and find interesting new companies and many places are getting better, but we need a new record and involvement from a group that could never come to HIMSS. A narrative for the illiterate, uninformed, impoverished forgotten stories.


Patients’ Rights Videos

Posted on June 9, 2016 I Written By

John Lynn is the Founder of the blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of and John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

ONC and OCR recently released a number of videos that outline patients’ rights. Here’s one called “Individual’s Rights under HIPAA to Access their Health Information”:

What do you think of these videos? Will they effectively educate patients?

Makes me wonder what ZDoggMD would do with the content.

EHR and mHealth Successes and Fails: Around Healthcare Scene

Posted on March 31, 2013 I Written By

Katie Clark is originally from Colorado and currently lives in Utah with her husband and son. She writes primarily for Smart Phone Health Care, but contributes to several Health Care Scene blogs, including EMR Thoughts, EMR and EHR, and EMR and HIPAA. She enjoys learning about Health IT and mHealth, and finding ways to improve her own health along the way.

Patients are somewhat taught to fear sharing medical data. While privacy is important, especially when it comes to health, being more willing to share medical data can yield great results. The key is knowing who to share information with, and who to avoid. 

EHR vendors can be tricky when it comes to keeping clients around. Sometimes, they don’t really have a choice because the EHR holds client information “hostage” when the client says they are switching EHRs. However, this is a sneaky tactic, and there are many other ways to keep an EHR client longer — most importantly, providing a great product.

While many aspects of HIT have come to a halt, mHealth continues to flourish. There are many things that other parts of HIT can learn from mHealth’s success. First, mHealth doesn’t focus on every patient at once. Next, it is an unregulated industry. And finally, the projects are marketed directly to consumers and paid for by them as well. 

Are you a hospital leader and curious about what technologies you should be watching out for? Well, the ECRI Institute has compiled a list of technologies they feel executives should be looking at this next year. This list includes Electronic Health Records, mHealth, imaging and surgery, and more. 

When an EHR fails to work correctly, how do physicians deal with it? Researchers have observed clinical workflows to answer just that question. The observations concluded that while there was no correct answer, many use paper to record information. Hopefully, this study will show EHRs where their gaps are, and help them to correct them.

There are so many consumer medical devices out there. What makes one stand out from the best? And which one has the best form factor? Wrist bands or chest straps…hand held or pocket stored? Chime in over at Smart Phone Healthcare.

Survey Says…Patients Like EMRs (Or Think They Do)

Posted on March 9, 2011 I Written By

Katherine Rourke is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she's served as editor in chief of several healthcare B2B sites.

For years, public health officials and health leaders have been sounding the praises of EMRs, arguing that patients would enjoy safer, more effective care once providers went digital.

For a while, it was a tough sell, with surveys repeatedly suggesting that patients were suspicious that their data would be compromised or shared without their permission. Others seemingly just weren’t impressed with the concept.

Of late, however, it seems that the public has caught up, and may be well ahead of the provider community in its enthusiasm for digitizing medical records.  According to a new survey by GfK Roper, 78 percent of patients believe an EMR will allow doctors to give them better care whose doctors use EMRs believe that it helps the doctor provide better care.

According to Practice Fusion, an EMR vendor which backed the survey, patients are eager to get e-mailed appointment reminders, have their prescriptions sent electronically and view appointments online.

But wait a minute. Even if backing by a vendor hasn’t tilted the results, this kind of study doesn’t necessarily mean that patients really want an EMR as such.

My guess is that the folks surveyed by Roper have caught wind of a few cool things that more advanced medical practices and hospitals are doing (such as telemedicine, making test results accessible online and appointment scheduling) and they want in. Everybody likes convenience, no?

Somehow, I doubt they’re thinking about care coordination, sharing of medical records from one institution to another across an HIE, integrating data from various departments within a facility, creating data warehouses to do quality studies and so on.  They’re just starting to get a feel for the bells and whistles, some of which don’t even require an EMR to execute.

No, the truth is that it most Americans will never understand the clinical problems EMRs are designed to solve, as most will never delve into issues like risk analysis and patient safety management.  So their interest will inevitably flag.

But for now, we’ve got their attention. This is a moment — the EMR’s “15 minutes of fame” — in which the buzz is so intense that even consumers are getting excited.

Providers, now is the time:  Reach out and educate consumers on the value of your EMR investment while they’re still interested.  This moment may not come again.

UPDATE: As you’ll see above, Practice Fusion was kind enough to correct my understanding of a key part of of the study.  The idea that patients whose doctors already have EMRs in place are happy about it is different, of course, than saying that consumers generally want doctors to hurry up and adopt one. That being said, I’d still argue that even these patients are at a gee-whiz stage, and that their enthusiasm won’t last long. What do you think?