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The Extraordinary Value of Chronic Care Management As Seen Through The Lens Of The Patient

Posted on November 28, 2018 I Written By

The following is a guest blog post by Spencer Kubo MD, Chief Medical Officer at CareCognitics.

The concept of adding chronic care management (CCM) to primary care practices is appealing on many different levels, but implementation has been sporadic.  The dismal uptake is multifactorial and is largely based on the perception that the value (return) may not be worth the investment.  However, Wendi Capers, Practice Manager of Priority Health Group, a primary care practice in Las Vegas, Nevada, recently relayed to me three patient stories that are guaranteed to change your perspective.  This group was an early adopter of CCM and is using Cariatrix as their CCM provider.

Patient #1 is an 82-year-old male veteran who was becoming increasingly isolated, lonely and depressed after the death of his dog.  The patient did not have any family or friends.  He had no physical complaints that would have necessitated a call to his doctor and did not feel he had any reasons to request an appointment.  The Care Ally from Cariatrix noticed that the patient was not responding to the regular emails and texts that give reminders about upcoming preventative health measures. She called the patient and astutely picked up on the feelings of isolation. After their conversation, she found a program that could provide animal therapy for vets.  She also located a community center that held classes in Tai Chi, one of the patient’s favorite forms of exercise.  The patient is responding well to these interventions and has “turned around.”  Now the patient promptly responds to the emails/texts, and even calls the Care Ally every month just to check in, clear signs of greater engagement and well-being.

Patient #2 is a 62-year-old male with diabetes that was not well controlled, as evinced by a baseline A1C that was elevated to 11.9.  When asked about the suboptimal A1C result, the patient was taken aback, saying, “I can take care of myself.”  Again, this patient did not see the need to contact his doctor.  But the CCM team slowly won him over through multiple contacts.  The Care Ally then observed during medication reconciliation that there were extended periods between refills of his insulin and oral medications.  The patient at first did not acknowledge this gap, but then finally admitted that the co-pay had forced him to delay refills. He remarked, “I can eat and heat my home, or I can get my meds, but I can’t do both.”  The Care Ally was able to petition the manufacturers for hardship papers, and now there is no gap in prescription refills.  Most importantly, his A1C has been reduced to 7.9!

Patient #3 is an 83-year-old male who has a cognitive impairment.  After an annual wellness visit, the primary physician ordered home health care visits to help with the patient’s weakness and general limitations.  However, the patient became increasingly disoriented and refused to let the home health aide into the home, thinking she was a photographer.   As in the other cases, this patient was not responding to the regularly scheduled emails and texts that are standard components of CCM.  However, the Care Ally received an automated alert, read about his refusal to admit the home health aide in the EMR, and then called the patient directly.  The Care Ally immediately recognized the patient’s disorientation and called the police department to do a well check on the patient.  The police found the patient to be obviously confused and called an ambulance to take the patient to the hospital for an emergent evaluation.

You will notice some common themes in these patient stories.  The first is that the CCM program had established a digital two-way communication platform with the patient.  This is a game changer from the traditional paradigm of medical interaction, which is dependent upon the patient calling the office to report a problem.  None of these patients felt they had any reason to call the doctor’s office (in that they were unable to recognize that they were in need of any care). However, the lack of responses to email and texts served as an indicator to the Care Ally that something might be amiss. In the traditional paradigm, corrective actions are initiated only AFTER the patient contacts the doctor about a problem.  In the new CCM paradigm, there is outbound communication that can help detect problems even if the patient is not contacting the clinic.

Second, the CCM program could provide VIP services that truly made a difference in patient outcomes–these are simple yet extraordinarily effective.  One problem with the term “VIP Services” is that many think of limousines, suite upgrades and free meals.  But here we see that “VIP Services” can be low cost but directed interventions to resolve specific issues facing a patient.  Most clinical practices do not have the resources to contact patients who are not complaining, and most do not have the resources to respond to the cases above in the same proactive fashion that CCM allows.  A CCM program can truly provide that competitive edge and get medical practices paid for the effort!

Third, these examples point to the synergistic effects of technology and the human touch.  Technology is an answer because it can help us monitor patients for signals and provide additional communication channels.  But we need the human touch in many cases to really make the difference.  As a practicing cardiologist, I get excited about how much technology can help, but at the same time, I am humbled by how much technology still cannot do. It is the balance of technology and human touch that will be a game changer in healthcare.

Finally, it is important to assess the value of CCM in terms of revenue, improvement in quality scores and other hard metrics.  But there is a “softer” side to the value equation that makes CCM valuable and helpful to patient outcomes.  These stories from the “trenches” of CCM providers happen all the time–they form a compelling testament to the value of CCM!

About Spencer Kubo, MD
Spencer brings a diverse set of experiences and expertise to the chronic care management strategies of CareCognitics. Previously, he was Medical Director of the Heart Failure-Heart Transplantation Program of the University of Minnesota, where he authored over 250 original articles and abstracts. He has also been Chief Medical Officer or a consultant to numerous medical device companies developing breakthrough treatments to improve the lives of patients with cardiac diseases. He maintains a part time clinical practice and most recently was the Physician Lead of the Heart Failure Service Line for Allina Health. In that capacity, he leads a multidisciplinary group focused on improving outcomes of heart failure patients treated at any of the 12 hospitals and over 90 clinics in the Allina system.

Note: John Lynn, Founder of Healthcare Scene, is an advisor to CareCognitics.

Marginalized Populations Continue to Struggle for Access to Healthcare

Posted on May 23, 2018 I Written By

Colin Hung is the co-founder of the #hcldr (healthcare leadership) tweetchat one of the most popular and active healthcare social media communities on Twitter. Colin speaks, tweets and blogs regularly about healthcare, technology, marketing and leadership. He is currently an independent marketing consultant working with leading healthIT companies. Colin is a member of #TheWalkingGallery. His Twitter handle is: @Colin_Hung.

I recently had the privilege of attending the annual #Cinderblocks5 event in Grantsville MD. Organized by the incredible Regina Holliday, this event is a blend of art school, community town-hall, healthcare update, and patient rally. It is definitely not your typical healthcare conference. This was my third year attending and every year I get more out of the event.

The only thing I can compare #Cinderblocks5 to is summer camp. Remember going to camp in the middle of nowhere – seeing old friends and meeting new ones while doing things you don’t normally do? That’s kind of what #Cinderblocks5 is like. It’s the only event on my calendar where I will hear a plea from an HIV-positive patient about the need for better access, followed by an update from a local community leader about the latest in affordable housing, followed by a walking tour with a park ranger.

Set in the idyllic hills of Northwestern Maryland, Grantsville is a tiny little community that is a stone’s throw from Interstate 68. It was historically a stop on the National Road (US Route 40) which once carried thousands of pioneers. The town of 800 is now home to a budding artisan community and has one of the best hidden gems of a restaurant I have ever eaten at – The Cornucopia Café.

Of course the town is now the home of my good friend Regina Holliday: speaker, tireless advocate and community leader. She is the force of nature who created the #TheWalkingGallery which I am honored to be a member of.

Although there is never a planned theme to #Cinderblocks5 events, one always emerges. For me, the theme of this year’s event was marginalized populations and their access (or lack of access) to healthcare. The first speaker was none other than Amy Edgar APRN, CRNP, FNP-C @ProfAmyE who spoke about her work pioneering mental health work at Children’s Integrated Center for Success @CICSuccess. Access to mental health services remains a challenge – especially for those who need it most: marginalized people.

We later heard from Heather Hanline, Executive Director of the Dove Center @dovecenter_gc –  which provides safety, advocacy and counseling to survivors of domestic violence and sexual assault. There is such a need (unfortunately) for these types of services in rural communities, a point made by Hanline several times in her impassioned presentation. Without the Dove Center, trauma survivors would have to drive miles into the big cities to get help.

We also heard from Robb Fulks @TheIncredibleF. Fulks is an incredible human being. For almost his entire life the odds have been stacked against him. He has numerous comorbidities including HIV. As if that is not enough he is coping on a shoestring budget. In the past Fulks has spoken out against the rising cost of life-sustaining medications that used to be <$20 and against exclusionary tactics by insurance companies. This year Fulks said the most powerful line at #Cinderblocks5:

Other speakers at #Cinderblocks5 included:

  • Ashley Elliott a recovering addict (sober since 2012) who talked about how she battles the stigma in her small town and how there is a lack of recovery programs in rural communities
  • Michael Mittelman @mike_mitt who highlighted how poorly living organ donors are treated by the healthcare system after their life-saving gift is given
  • Jade Kenney and Kendra Brill who spoke about their struggle to build a safe haven (Rainbow Bridge Home – https://www.rainbowbridgehome.org/) for the LGBTQIA community in a rural setting and how they were/are both marginalized by “polite society”

Being at #Cinderblocks5 was a poignant reminder that: (a) art, music and reflection are as much a part of healthcare as IT, workflows and treatment regiments; (b) there is no substitute for in-person meetings; and (c) that we still have a lot of work to do when it comes to people at the margins of healthcare. Whether it’s because of economics, social norms, mental health issues or belief systems, there are many people who do not have access to healthcare that need our help. We cannot forget about these people when designing the health systems of the future and the Health IT solutions that will power them.

The Challenge of Being a Patient with a Rare Disease – #PatientStories

Posted on June 2, 2017 I Written By

John Lynn is the Founder of the HealthcareScene.com 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 InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

The following is a guest blog post by Chelsea Freund who blogs at The Sick and the Dating. This post is part of our series of Patient Story blog posts where we ask patients to share their first-hand experiences with healthcare.

Do you believe in coincidences? Back in 2007, I decided to go back to school to become an R.N. I had been volunteering at Phoenix Children’s Hospital as a “bedside hugger” – which is exactly what it sounds like – and decided that I wanted to be a pediatric nurse, so I was studying away. The subject was advanced medical terminology, and specifically I was on the GI tract. I had been feeling terrible all day. I hadn’t been able to eat, hadn’t had any appetite. There was a nagging pain on my right side that wouldn’t go away. Finally I forced myself to eat something but it really didn’t sit well and the pain became increasingly worse.

I continued studying. I came across a paragraph or two that outlined the symptoms of appendicitis. I stopped. I thought to myself, “No way.” But by that time I couldn’t completely straighten up, and I re-read the paragraphs again. I probed my lower right quadrant. Yes, pain, there was definitely pain. I was sweating. I was also by myself and feeling a little silly; my roommate was off somewhere with her boyfriend, so it was up to me to make something happen. I had two thoughts: 1) I’ll go to the hospital that’s a mile away, and at worst, I’ll feel like an idiot, and 2) I’m going to check ahead in my book to see what else the universe has in store for me. The next chapter was on the eyes. (This is significant.) I drove myself to the hospital, hobbled up to the front desk doubled over, and it turned out my appendix was close to bursting.

I didn’t get to finish my nursing degree. The school system that I had chosen cut out evening classes for nurses and I needed my day job in the tech field in order to survive. But what I learned in school proved invaluable.

I have three-ring binders full of my medical records that I carry with me to new doctors. In the past almost seven years, I have tallied up all of the new doctors I have seen – including those in the ER – and the count is now at 59. This is where my nursing school comes in handy. I can easily communicate using the correct terminology, plus I understand what they are referring to 98% of the time – rarely do I have to ask for an explanation. Friends tell me either that it was a waste that I went to school and that I didn’t get my degree, or that I can finish it out later, and I tell them that I’m pretty sure that I went for this purpose alone: to be a patient, and specifically to be a rare disease patient.

I have been a patient all of my life. Some people are lucky in that they rarely get sick. I was that kid who always sat out from gym class because my asthma was strangling me, or I was allergic to the chlorine in the pool so I emerged from the water with great, big hives. I was always in the middle of or recovering from some upper respiratory or lung infection.

As a young adult in my 20s, I lost all of my hair over my entire body. It’s okay, I had been losing it in increments when I was much younger; it just decided to take a hike permanently when I hit 28. At age 31, I was diagnosed with Hashimoto’s. It’s also not a show stopper – I just have a really tough time losing weight and controlling my body temperature. Going through nursing school actually gave me an advantage over other students because I already understood these processes, and in turn I had a much easier time communicating with my doctors.

I was 36 when I came down with my mystery disease in July of 2010. I have never cursed my student loans – not once. I didn’t have a lot of catching up to do in the medical field to be my own advocate, because this road has been very lonely. I have to advocate a lot while also being very sick. Not once have I ever had someone come with me to appointments or the hospital.

The very first encounter I had with a neurologist was a disaster, but I knew enough not to take his answer as the final word. He performed an EMG on my limbs, checking me for myasthenia gravis, because my face was paralyzed on one side when I was upright and I would get ptosis in both of my eyelids (but they would go back to normal immediately when I tilted my head parallel to the floor), and I had a lot of trouble walking. We agreed I likely didn’t have MS or even Hashimoto’s encephalopathy according to the MRIs I had done. The EMG came out with normal results. He wrote in my chart that what I had must be psychosomatic and sent me on my way.

I started to do a lot of research at that point. After going through 14 doctors in various disciplines, I ended up being helped by a neurosurgeon through Barrow Neurological Associates in Phoenix, simply because I demanded a lumbar puncture since that was the only test I hadn’t had done in the past year. My symptoms resolved for 12 hours, so we repeated the test 4 days later, and the exact same thing happened. We decided to insert a shunt.

However, we didn’t know I would be allergic to the shunts. I had 10 surgeries in less than 4 years. My body clogs and strangles and breaks the shunts in rebellion, now only days after surgery. My neurosurgeon gave up on trying to keep a working shunt in me. But I feel like we found something out in the process that we wouldn’t have found out if the failures wouldn’t have kept happening only because we moved the location of the shunts, and that is that the membranes in my brain are extra thick. My neurosurgeon has only seen that in one other patient in his lifetime.

After my neurosurgeon stopped operating on me, I moved back to Minnesota so my family could help to care for me – I can’t be upright for any length of time before my face becomes paralyzed and my eyelids are 80% closed, and the pressure in my cranium builds to an intolerable level. After I moved, a former acquaintance happened to find my dormant account on Twitter. He had actually been looking for a former client with the same first name, but was happy to reconnect. When he read my blog, he encouraged me to actively use Twitter to make connections and join chats. It’s because of his tutelage that I’ve been a guest on podcasts, became a product blogger, and have been in contact with various researchers, so I’m forever grateful.

One of the researchers I connected with has discovered the lymph node system in the cranium, which was previously thought not to be present. We traded a few emails, but the biggest barrier is that I’m a human, and he works mainly with rats. It’s a big leap to go from rodent to human in his world, even if we can both see the possibilities. So though there may be some sort of connection between my thick membranes and his newly-discovered brain lymph node drainage system, he’s probably not going to look at me until my brain is ready for slides.

Since I’ve moved to Minnesota, it’s been very difficult to convince doctors to see me, much less keep me as a patient. In fact, after five unsuccessful tries to get in, I now have an official letter from the Mayo Clinic telling me they will not see me because I’m too rare to diagnose or treat. I had one neurologist tell me she was “just a neighborhood neurologist,” so there wasn’t anything she could do for me. I had a rheumatologist tell me to do Thai Chi, and then write in my records that I was being non-compliant for not doing it, even though my severe vertigo doesn’t even allow me to stand in a shower. I’ve had endless doctors pat me on the knee and tell me that they couldn’t help me but they were sure “someone” could.

I finally settled on a neurologist – I think she was the 58th doctor to see me – because she ordered the tests I asked for, and even one I didn’t: I wanted an upright MRI because everything happens with my symptoms when I’m upright, and I got a cognitive function test to boot. When the upright MRI showed that all of my ventricles collapsed and I have a tumor, she attempted to refer me to a neurosurgeon. The neurosurgeon sent a letter back saying that “nothing looked out of the ordinary.” I’m no expert, but then again, I’m no slouch – and I just happen to know that looking at my corpus callosum on the MRI, it should not look like Charlie Brown’s crumpled up hair swoop. The search continues for any neurosurgeon in the state of Minnesota who can handle my case. The neurologist has agreed to keep me as a patient, but her nurse often calls and starts with, “The doctor doesn’t think she needs to see you, but if you feel like you want to see her, you can.” That’s not exactly the welcoming committee.

I do have a few excellent doctors. I wish I could clone my GI doctor and carry him around in my pocket and take him out when I need a pep talk. He has the best bedside manner and has taken the time to talk to me about what is happening with me besides my intestinal tract because he’s truly interested and he wants to help. I think my pain doctor is a standup guy too; he’s in the process of moving to another medical group and deliberately chose one that didn’t have a non-compete clause. It meant less money for him, but it also means he can keep seeing the same patients. He has learned to respect me because he recognizes that I do my research and I’m a rule follower.

I have another doctor and diagnosis simply because of coincidence, and it’s a big one. While I was trekking around and being rejected by so many doctors, a friend called me up and said, “Why don’t you make an appointment with this mast cell activation syndrome doctor? It seems like you have a lot of the symptoms.” I thought to myself, “Well, why not? I’m making all of these appointments. What’s another appointment?” It turns out that that particular doctor takes a year to get into for the initial appointment. There was a cancellation, so I got in within eight months. And I did get the diagnosis. And it’s the reason my body rejects the shunts. And this doctor moved to Minnesota a year before I did. I have been assured that he won’t send me away like all of the other doctors.

So if we are in the same city and we happen to meet, I might show you my stupid human trick, which is to tilt my head so that the fluid moves around in my cranium and my face becomes un-paralyzed and I can see again. If you have the time, I may whip out my binders of medical records. I can explain everything to you. You just need to believe what you are seeing and keep an open mind.

Thanks to Chesea for sharing her story. Be sure to read other

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.

 

Online Reputation Management: Trending Topic or Industry Shift?

Posted on December 20, 2016 I Written By

The following is a guest blog post by Erica Johansen (@thegr8chalupa).

It seems that in healthcare this year online reputation management has taken center stage in conversations as consumers have a larger voice in the healthcare purchasing experience. Reviews, in particular, provide an interesting intersection point between social media technology and healthcare service. It is no surprise that there is pervasive, and exciting, conversation around this topic across the industry at conferences and online.

During the #HITsm chat on Friday, we had an excellent conversation about the value of online reputation management by physicians and other healthcare providers, and what lessons could be learned from one managing their own reputation online. During our chat, we asked the #HITsm community (as patients) about their behavior leaving and reading reviews as a part of their care selection process, as well as the role that social technology plays today in the patient experience. There were some exceptional insights during our conversation:

1. Should providers be interested in their online reputation? Does it matter? There was a resounding “yes” among attendees that attention should be given to a practice’s online brand.

2. As a patient, have you ever read a review after being referred to, or before selecting, a new physician? Perhaps unsuprisingly, most attendees supported trends in consumer behavior by reading reviews of physicians online.

3. Have you ever written an online review for a healthcare experience? If so, was it generally positive or negative? Suprisingly, the perspective of our attendees suggested that the consumption of reviews was more common than the creation of them. Most folks just won’t review unless they felt compelled by an experience that surpassed,or fell too short, of expectations.

4. Is there an expectation that providers (individual and/or organizational) respond to social media engagements by patients? Our attendees chimed in that maybe it isn’t so much that there is an expectation, but it could signifantly help a negative review or solidify a positive one.

5. What would a healthcare provider who is exceptional at managing their online reputation look like? Examples? Stellar examples shared illustrated folks that have harnessed the power of social media to augment their patient expierence and brand. For example:

Bonus. What lessons could be learned from managing your personal online reputation that could guide provider reputation management? This question took a different turn than I initially anticipated, however, for the better. Many insights shared included mentions to social platforms and meeting the patients where they are. There is so much opportunity for the next phase of healthcare social media as platforms begin to cater more to feature requests and uses based on consumer trends. (One great example of this is the Buy/Sell feature added to Facebook Groups.)

Additional thoughts? There were some flavorful insights shared during the chat that are worth an honorable mention. Enjoy these as “food for thought” until our next #HITsm chat!

I’d like to say a big “thank you” to all who participated in the last #HITsm chat (and are catching up after the fact)! You can view a recap of these tweets and the entire conversation here.

#HITsm will take a break for the next two weeks over the holidays, but we will resume in 2017 on Friday, January 6th with a headlining host Andy Slavitt (@ASlavitt) and the @CMSGov team (@AislingMcDL, @JessPKahn, @AndreyOstrovsky, @N_Brennan, @LisaBari, and @ThomasNOV).

Where’s the Humanity in Healthcare?

Posted on September 8, 2016 I Written By

The following is a guest blog post from Snarky Frog. Yes, that’s her real name. Ok. You got us. No, it’s not her real name, but that’s how she wants to be known online. Who are we to judge her if she loves frogs and snark that much?
Snarky Frog
There was a time when I blogged. There was a time when I wrote about living with POTS (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers Danlos Syndrome). There was time when I wrote about having a parent who…well…if I were to explain in this piece, I would lose all credibility.

There was time when I thought people would read what I wrote. There was a time when I thought people would care about how my father died (Yes hospital in CT, I do hold you accountable for that).

There was a time when I thought people would care that when I was half conscious after fainting, a nurse took it upon herself to show me what happens to drug users – apparently folks who use drugs have no rights to sexual dignity.

I wasn’t using illegal drugs then and I don’t now. The more you read about POTS patients, the more you read about how strange our symptoms are. I still argue my symptoms don’t matter, the way I was stripped of my humanity did and still does – turns out nobody really agrees with me. Guess you can do whatever you want to drug users (I’ve since learned this again and again via EMTs and others). As it turns out, you can also pretty much do this to patients you think are faking their disease.

There was a time when I blogged about how I couldn’t understand that a patient advocacy org promoted things one day, disagreed with them the next, then went back and forth for years. By the way, what’s still up with that? Will exercise heal me or is it IVIG I need or is it small fiber neuropathy all around? Oh… you need to study more – well hate to tell you patient group, if I need IVIG, exercise won’t save me. Though, it honestly may help.

There was a time in life when I questioned things. There was a time when I wrote. There was a time I cared. I probably still do all of those things but I do all of it less.

Nobody cared what I wrote so I stopped publicly blogging. The things I tried to get folks to care about – I was on my own with. I wrote but my writing was for me. I took my blog pieces down one by one.

By that time my writing abilities were somewhat gone after I had taken a few too many hits to the head. Things became mostly jots on google docs. My posts are now long gone into the ether and even the WayBackMachine can’t find them.

Right now I could write about not having a single doc who knows much about any of my diseases. I could write about having 3 different specialists who each understood different pieces of EDS / POTS leave their practices in the same year. I could write about fighting with hospital billing offices. I could write about how a doctor who played a role in quality affairs at an academic medical center could literally get nowhere with my insurance when he tried to get me some assistance. I could write about the discussions I have had with the insurance co regarding how much my POTS costs them (about 90-100K in 2015, likely to be more this year) and the various suggestions I’ve given them to lower those costs. I could write about how they respond with the fact that none of those suggestions, while cost saving to them, are part of my plan, and as such, are not things they can or will do.

I could write about my grief over a friend. I could write about the things I saw happen to her the one time I visited her in the hospital. I could write about how I wanted to help more but couldn’t.

I could write about system failures. I could write and I could write and I could write some more about how every single part of the system has failed me and has failed my friends. It might not all make sense but I could write. The irony is the thing that matters to me the least is the specific cost yet that’s what people care about.

I care about the fact that my friend died.

I care about my losses as a human being. I care how much of my human dignity I have lost and how much has been taken away from me since I started getting sicker. I care about the fact that I will likely lose my job (days off, their having to worry or perhaps lack of worry about my falling on the job, my requests for accommodations etc.). I care about the fact that I will never be able to do what I wanted to do with my life – PhD, fieldwork – yeah, not a chance.

I care about the fact that I will eventually get so physically injured by a fall, by EMTs, by hospital staff, or other that I will no longer be able to get out of bed. I care about the fact that I will forever wonder whether one of these things will kill me, and if so, when.

I can give you the health care cost numbers but they don’t matter to me. Ask any chronic illness patient for his or her own costs of care and you’ll find the same thing. Once you go past “typical” or “trendy” chronic illnesses, there is no care coordination, there is nobody to turn to for help, and your insurance company, well maybe they’ll pay for something and maybe they won’t. I do wonder, if I were sick and rich would I still be as sick?

One thing I do know, I’m damned tired of being sick. I’m tired of identifying myself that way and I’m tired of others doing so. I’m also tired of wondering if it’s in my head and tired of having people tell me it is. (And if it is all in my head, then please, by god, someone help me treat that.)

If creating a blog post that delineates each and every expense will help me find a doctor who can help me with whatever the heck is wrong, yes, I will write one. That said, that post would take away a part of me, the part that says humanity matters most and that’s what we should care about.

This post is part of our effort to remind us of the patient perspective by sharing patients’ stories. Thanks Snarky Frog for sharing your story with us. If you have a patient story you’d like to share, please reach out to us on our Contact Us page.

Gastroparesis – A Patient Story

Posted on September 2, 2016 I Written By

The following is a guest blog post by Melissa Adams VanHouten. You can read more about her on her Gastroparesis: Fighting for Change website and her blog.
Melissa Adams VanHouten - Gastroparesis
Since being diagnosed with gastroparesis, my life has changed in unimaginable ways – and the medical community, which did not initially recognize my complex needs, left me ill-prepared for these changes.  In February 2014, I was hospitalized with severe pain and vomiting, put through a battery of tests, diagnosed, and sent home with only a brief explanation of my illness. No one prepared me for the seriousness of this condition.  Perhaps they thought I understood, but I did not.

My ordeal began in the ER with blood tests and scans.  When these tests showed nothing of concern, the doctors forced a tube down my nose and pumped my stomach in preparation for an upper endoscopy.  To this day, I have never experienced anything quite so unpleasant and terrifying.  The doctors were kind and warned me that, though necessary, the procedure would be painful.  They did their best to talk me through it, but it was not an experience I ever wish to relive.  In addition to the endoscopy, I was sent for a Gastric Emptying Study (GES) the following day.  This was not a particularly harsh test except for the fact that I was required to keep the food down despite my frequent vomiting episodes.  My situation was not improved by the radiology technician warning me repeatedly and sternly that if I vomited, we would have to repeat the test.  My week was rounded out with more scans, additional blood tests, and a few IV changes.

The good news is that, though the tests were difficult to endure, the nurses and doctors were (for the most part) kind and understanding.  They controlled my pain well, answered my questions when they could, and took reasonable steps to ensure my comfort; however, my stay was not without issues.  There were numerous occasions where I had to ask what medication I was being given and why, and there were a couple of medications that I concluded were unnecessary – such as the “standard treatment” for heartburn, which they assured me everyone who complained of stomach pain received, when I was not experiencing heartburn.  I was also woken up by the blinding overbed light several times during the night, every night, for blood pressure checks and such when I really could have used the rest.  I was discouraged from showering and walking the halls as well, as this seemed to be an inconvenience for the nurses. The biggest issue by far, though, was the coordination of care.  I lost count of how many different medical providers I spoke to, could not understand their various roles in my care, and was required to repeat my “story” every time someone new arrived.  I would have loved to have felt as if everyone working with me was “on the same page.”

Fortunately, at the end of my week’s stay, I did receive a diagnosis.  I am thankful I was diagnosed so quickly, since many in my community spend weeks, months, or even years seeking answers.  What is not quite so fortunate is that, upon my release, I was sent home with very little information regarding my condition and was told simply to follow up with a gastroenterologist in about 6 weeks.  I had no detailed diet plan, no medications to try, and no idea what to expect.

I recall the doctors giving me an overview of gastroparesis.  They told me it was “paralysis of the stomach” and impressed upon me that there was no cure.  I remember them saying I would need to make some dietary changes, and if those didn’t work, there were a few medications to try – but they came with risks and negative side effects.  I recall them telling me that in some severe cases, people would opt for surgery to implant a gastric electrical stimulator or resort to feeding tubes.  Mostly, though, I remember them saying that some would recover almost completely over time and would not experience long-term effects.  Of course, this last statement is what I believed would be the case for me.  After all, I was in good overall health.  Not a big deal.  I would follow a liquids-only diet, work my way up to soft foods and solids, just as they indicated I should, and I would be fine.

But it did not happen that way.  I went home believing I would continue to improve; instead, my condition deteriorated.  Within a couple of days, I started vomiting again and could barely keep down liquids.  The attacks of pain worsened, and I became so weak that I honestly could not lift my head up.  I told my family goodbye.  I truly believed I would die.  I could not get in quickly to see my new gastroenterologist, and I had no idea what to do.  I finally mustered up the courage to call my doctor and told him that despite the risks, I thought I should try one of the medications the hospital doctors had mentioned.  He agreed, but because of FDA restrictions and requirements associated with my particular medication, it was two horrendous weeks before I could begin taking it.  These were without a doubt the longest two weeks of my life.

Since starting the medication, I have stopped vomiting (for the most part) and can now function well enough to make it through the day, but I still cannot eat without pain.  It is clear to me now that I will likely never again be able to eat “normal” foods in “normal” amounts, and it is crystal clear to me that this is a life-altering disease from which there is perhaps no coming back.  I have experienced levels of fatigue I previously thought impossible, endured unfathomable pain, and come to realize the horrors of hunger and malnutrition.  I had no idea I would face this.  The doctors did not impress on me that this was a serious, chronic illness, and they left me in the dark as to how to cope with my illness should it not resolve itself, as I had believed it would upon leaving the hospital.

I am thankful I now have a physician who is willing to listen to my concerns and partner with me in evaluating treatment options.  Though there are few treatments available for gastroparesis, my doctor seems to genuinely care and refuses to give up on me.  That means the world to a person in my circumstances.  My experience differs from many in the gastroparesis community.  Unlike me, they remain lost and confused, as I was immediately after diagnosis.  They never find that competent, compassionate doctor.  These are the people for whom I advocate.  I hope that eventually we are able to establish a healthcare system that meets the needs of all.  We need better care, better treatments, and a medical community that comprehends our needs.

This post is part of our effort to remind us of the patient perspective by sharing patients’ stories. Thanks Melissa for sharing your story with us. If you have a patient story you’d like to share, please reach out to us on our Contact Us page.

Time To Build EHRs That Address Human Complexity

Posted on September 1, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

As things stand in our world, caring for patients generally falls into two broad categories: treating the body and its innumerable mysteries, and caring for practicalities of the patient’s mental and social health. The two are interrelated, of course, but often they’re treated independently, as if each existed in a separate world.

But we know that this is a false dichotomy. People don’t go from being patients at one point and human beings later, and treating them that way can fail or even cause them harm. At every point, they’re people living in a complex world which may overwhelm their capacity for getting good healthcare. Their values, social networks, resources (or lack thereof), education and mental health status are just a few of the many dimensions that influence a patient’s overall functioning in the world.

This isn’t a new idea. As Frances Peabody noted in a 1927 lecture to Harvard Medical School students, “the secret of the care of the patient is in caring for the patient,” by understanding how a patient’s personal and emotional circumstances influence their health status. It’s a concept that needs revisiting, particularly given that the automation of care seems likely to further alienate doctors from patients.

Given how seldom physicians have a chance to address patients’ life circumstances, and how important it is that medicine returns to this approach, it was good to see the The Journal of the American Medical Association weigh in on the issue.

In the Viewpoint piece, entitled “Evolutionary Pressures on the Electronic Health Record: Caring for Complexity,” the authors contend that next-generation EHRs will need to do much more to help physicians address an increasingly complex patient mix.  They suggest that rising patient complexity – due to issues such as co-occurring chronic and rare diseases, organ transplantation and artificial devices – are changing the practice of medicine. Meanwhile, they point out, patients’ personal experience of illness and the social context in which they live are still important considerations.

But EHRs aren’t developing the capacity to meet these needs, they note:

The evolution of EHRs has not kept pace with technology widely used to track, synthesize, and visualize information in many other domains of modern life. While clinicians can calculate a patient’s likelihood of future myocardial infarction, risk of osteoporotic fracture, and odds of developing certain cancers, most systems do not integrate these tools in a way that supports tailored treatment decisions based on an individual’s unique characteristics.

Existing EHRs aren’t designed to help physicians use predictive analytics to deliver preventative care or services to targeted individuals either, they note. Nor are they helping clinicians to learn from past cases in a systematic manner, the piece says:

When a 55-year-old woman of Asian heritage presents to her physician with asthma and new-onset moderate hypertension, it would be helpful for an EHR system to find a personalized cohort of patients (based on key similarities or by using population data weighted by specific patient characteristics) to suggest a course of action based on how those patients responded to certain antihypertensive medication classes, thus providing practice-based evidence when randomized trial evidence is lacking.

The JAMA authors also take EHR vendors to task for doing nothing to capture social and behavioral data (otherwise known as “social determinants of health”)  which could have a big impact on health outcomes and treatment responses:

In this world of patient portals and electronic tablets, it should be possible to collect from individuals key information about their environment and unique stressors – at home or in the workplace – in the medical record. What is the story of the individual?  The most sophisticated computerized algorithms, if limited to medical data, may underestimate a patient’s risk (eg, through ignorance about neighborhood dangers contributing to sedentary behavior and poor nutrition) or recommend suboptimal treatment (eg, escalating asthma medications for symptoms triggered by second-hand smoke).

If EHRs evolve successfully to embrace such factors – and move away from their origins in billing support – physicians may spend much less time with them in the future. In fact, the authors speak lovingly of a future in which “deimplementing the EHR” becomes a trend, and care no longer revolves around a computer. This may not happen anytime soon.

Still, perhaps we can speak of “rehumanizing the EHR” with information that address the whole, complex person. A rehumanized EHR that Francis Perkins would use, were he alive today, is something physicians should demand.

E-patient Update: Remote Monitoring Leaves Me Out of The Loop

Posted on May 24, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

As some readers may recall, I don’t just write about digital health deployment — I live it. To be specific, my occasional heart arrhythmia (Afib) is being tracked remotely by device implanted in my chest near my heart. My cardiac electrophysiologist implanted the Medtronic device – a “loop recorder” roughly the size of a cigarette lighter though flatter — during a cardiac ablation procedure.

The setup works like this:

  • The implanted device tracks my heart rhythm, recording any events that fit criteria programmed into it. (Side note: It’s made entirely of plastic, which means I need not fear MRIs. Neat, huh?)
  • The center also includes a bedside station which comes with a removable, mouse shaped object that I can place on my chest to record any incidents that concern me. I can also record events in real time, when I’m on the road, using a smaller device that fits on my key ring.
  • Whether I record any perceived episodes or not, the bedside station downloads whatever information is stored in the loop recorder at midnight each night, then transmits it to the cardiac electrophysiologist’s office.
  • The next day, a tech reviews the records. If any unusual events show up, the tech notifies the doctor, who reaches out to me if need be.

Now, don’t get me wrong, this is all very cool. And these devices have benefited me already, just a month into their use. For example, one evening last week I was experiencing some uncomfortable palpitations, and wondered whether I had reason for concern. So I called the cardiac electrophysiologist’s after-hours service and got a call back from the on-call physician.

When she and I spoke, her first response was to send me to my local hospital. But once I informed her that the device was tracking my heart rhythms, she accessed them and determined that I was only experiencing mild tachycardia. That was certainly a relief.

No access for patients

That being said, it bugs me that I have no direct access to this information myself. Don’t get me wrong, I understand that interacting with heart rhythm data is complicated. Certainly, I can’t do as much in response to that information as I could if the device were, say, tracking my blood glucose levels.

That being said, my feeling is that I would benefit from knowing more about how my heart is working, or failing to work appropriately in the grand scheme of things, even if I can’t interpret the raw data of the device produces. For example, it would be great if I could view a chart that showed, say, week by week when events occurred and what time they took place.

Of course, I don’t know whether having this data would have any concrete impact on my life. But that being said, it bothers me that such remote monitoring schemes don’t have their core an assumption that patients don’t need this information. I’d argue that Medtronic and its peers should be thinking of ways to loop patients in any time their data is being collected in an outpatient setting. Don’t we have an app for that, and if not, why?

Unfortunately, no matter how patients scream and yell about this, I doubt we’ll make much progress until doctors raise their voices too. So if you’re a physician reading this, I hope you’re willing to get involved since patients deserve to know what’s going on with their bodies. And if you have the means to help them know, make it happen!

Blind Woman Enjoys 3D Printed Ultrasound of Her Baby

Posted on May 14, 2015 I Written By

John Lynn is the Founder of the HealthcareScene.com 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 InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Since I’ve been focusing on patient stories this week, I thought that I’d share this viral video that I’m sure many of you have seen. If you haven’t seen it, this is the video of a lady who is blind as she gets to touch and feel a 3D printed ultrasound of the shape of her baby. It’s a pretty amazing video and the ladies reaction to it is quite extraordinary.

I love this video because he provided me a new understanding of the challenges people with disabilities can have in their patient experience. However, as a tech junkie, I also totally love how all these technologies could come together in such a tremendously beautiful way. This is why I’m so optimistic about the next 10 years of healthcare. We’re just getting started when it comes to technology improving healthcare.