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I Really Don’t Want to Be Your “Worst” Patient

Posted on April 29, 2016 I Written By

The following is a guest blog post by M. Maxwell Stroud, Lead Consultant at Galen Healthcare Solutions.
Max - Healthcare IT
“I really don’t want to be your “worst” patient. Really, I don’t.”  These are the words that I think to myself as I prepare to ask my new specialist if he has interfaces with either of the hospital labs in my hometown 40 miles away.  My provider humors me and lets me know that if I go to one lab he will get a fax, and another and he will be able to view the results in a portal.  Sigh.

I have for a long time kept all of my care to one healthcare organization in town – in part because I am a firm believer in one chart for one person and I personally don’t want to have to deal with the mess of coordinating all of my records or manually schlepping things from office to office.  I love the concept of “one source of truth” and I know how far away we really are from that.  So why venture out of town and (gasp) to different healthcare organization?  Because that is where the best specialist was that was seeing new patients and mine had left town.

As a patient, I get to make that choice.  I get to decide where I get my care – as I should.  I also make the choice knowing that it will result in me having two distinct medical records in orgs 40 miles away from each other.  I also know that it means I am, at times, going to have to put on my advocacy hat and make sure that my records are correct, that my labs got where they need to go and that everyone has the information that they need so that I can get the best care.

Wait. What?  The patient is the only person in this continuum of care who is making sure the right person has the right data at the right time?  Yep.  Some might say that I am a control freak or that I need to relax a little – but I am informed by the life experiences of the patients that have been a part of my life.  I have seen what happened when my father got admitted to the hospital without an accurate medlist available.  I have seen the binder that my sister has to carry with her on the train that has her MRIs and PET scans to take to her next oncology appointment in the city.

It blows my mind that just a little over a month ago I was at the largest healthcare IT conference in the country (HIMSS16) discussing interoperability, and now I am on the phone with the nurse at the clinic because she cannot find my lab results … “Oh wait” she says “they are in the print and scan pile.”  Great.  Just great.

I have heard the argument that patients are not interested in their data.  There is a chance I could be an outlier – I live my life in a world of health data and I am acutely aware of how it is used in my care and the care of others.  I really think the truth is you don’t know how important it is to you until it becomes important to you.  One life event, one family member’s crisis, one rare diagnosis – and you begin to understand that you are the most important person in your own healthcare.

We have centered record keeping around the physical location of care.  This makes sense when you think historically.  Patients used to be less mobile, receive care locally and lived locally.  Additionally, the role of the “legal medical record” is a legal representation of the care provided and decisions made by a healthcare organization.  Organizations still need to document medical decision making, but patients are becoming more and more mobile.  People move from city to city, or even within health networks in the same town.  In the digital age, even if the legal medical record lives with the provider —  the data needs to follow the patient.

We can do better by patients and consumers.  The information is there, it is just not yet connected in the way that will make it available, actionable and meaningful to everyone who needs it.  It’s not just about finding an easy button to import discrete data, but also a culture change.  Truly putting the patient at the center of the data is simultaneously mission critical and more than a little revolutionary.

About M. Maxwell Stroud
M. Maxwell Stroud, MSW MSW is a Lead Consultant at Galen Healthcare Solutions with a professional background in both healthcare and social work. Max has been consulting in Health IT for over 8 years.  She has worked with every aspect of health IT in ambulatory care including facilitating clinics through the transition from paper to electronic formats, supporting teams through major system-wide upgrades as well as add-on implementations and integration projects.       Max has a passion for collaborative process and building processes that bring all stakeholders to the table to build systems that meet the needs of the business organization, the providers and the patients.  Max can be found on Twitter at @MMaxwellStroud

Doctors and Patients are Largely Missing at #HIMSS16

Posted on February 16, 2016 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.

I recently got an email from someone asking me if I knew of practicing doctors that would be at the HIMSS Annual conference in Las Vegas (Or as we affectionately call it, #HIMSS16). I was sadly struggling to find an answer to that question. In fact, as I thought back over my last 6 years at HIMSS conferences I could probably count on my hands and feet how many practicing doctors I’d spent time with at HIMSS.

Consider that HIMSS attendance has exploded over the years and I won’t be surprised if HIMSS attendance passes 50,000 people this year. No doubt I only meet a small subset of the attendees, but there certainly should be more practicing doctors at the event. It’s unfortunate for our industry that they’re not there since their voice is so crucial to the success of healthcare IT.

I’m sure HIMSS has a count of how many doctors (MD or DO) are at the event. However, those numbers are skewed since I know a ton of MDs and DOs who attend HIMSS, but they’re not actually practicing medicine anymore. They’re CMO’s at vendors or startup entrepreneurs or clinical informaticists or something else. Many of them never even practiced medicine after residency. Nothing against these people. Many of them have amazing insight into what’s happening in healthcare. However, they’re not dealing with the day to day realities of practicing medicine.

I understand why many practicing doctors don’t attend HIMSS. It’s hard for them to get away from the office and justify traveling to a conference at their own expense. Plus, HIMSS registrations aren’t cheap. I don’t know why at this point HIMSS doesn’t give practicing doctors a free registration to the conference. Even if they did this, I know some practicing doctors who have attended HIMSS that went away disenfranchised by the disconnect between what they heard at the show and what they experienced in their offices. It’s no surprise why they don’t return to future shows. However, keeping them away isn’t the way to change that disconnect. Having them at the conference is the way to fix the disconnect.

A similar commentary could be applied to patients at HIMSS as well. I’m always a little tentative to say that patients aren’t at HIMSS since all 50,000+ attendees are or have been patients in the health care system. So, patients are at HIMSS. However, there’s a difference between someone who’s been a patient and someone who’s at HIMSS to represent the voice of the patient.

There has been some efforts to include more patients at HIMSS, but it’s still an infinitesimally small number compared to the 50,000 attendees. One solution is for more of us to be more of a patient voice at HIMSS. The other solution is to bring more patients who will be advocates for that voice.

This isn’t to say that HIMSS is a bad event. It’s a great event. It just could be better with more doctors and more patients present. If we can’t bring 50,000 people together and 1300 exhibitors and do some good, then something is really wrong. I’ve seen and written about some of the amazing announcements, initiatives and efforts that have come out of HIMSS. I’m sure we’ll see more of that progress again this year.

Plus, let’s also acknowledge that many of the 1300 HIMSS exhibitors and 50,000+ attendees spend a lot of time working with and consulting with doctors and patients when creating, evaluating and implementing healthcare IT solutions. In some ways a vendor or hospital CIO who’s talked to hundreds of patients or hundreds of doctors represents the voice of the patient and the doctor much better than 1 patient or 1 doctor sharing their own “N of 1” view of what’s happening in healthcare.

The reality of healthcare and health IT is that we’re talking about extremely difficult challenges. That’s why we need everyone in the same boat and paddling in the same direction. HIMSS is that event for healthcare IT in many ways, but could even be more valuable if more doctors and patients were in attendance.

The Patient Voice

Posted on May 11, 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.

For years I’ve been hearing over and over from various places that we need more of the patient voice in healthcare. These messages have come largely from prominent patient advocates like Regina Holliday and ePatientDave. The Society for Participatory Medicine has also had a strong voice in the fight to include the voice in healthcare and in particular in healthcare IT. While each of these people and organization have compelling stories to share, I’ve wondered if they’re really making the impact they want to achieve.

One problem I’ve seen with this effort is that Regina and ePatientDave are seen over and over and over again at conferences. While it’s great that each of them is advocating for the patient voice to be included in healthcare, I wonder if the healthcare IT community has basically tuned out the message because they’ve heard it over and over and from the same two people. If this was a really massive movement, then why don’t we have dozens or even hundreds of patients that are sharing their stories in prominent places?

I’m sure there are some really compelling reasons why we don’t hear from more patients and not the least of which is that they’re not invited. I don’t think that Regina and ePatientDave really want the lime light. They just want the message they espouse to be heard. So, I wonder if their goal wouldn’t be better served if they started sharing their spotlight with hundreds of other patients. I realize this can be a tricky proposition.

However, I first saw this happening at HIMSS where Regina worked together with HIStalk to have a number of patients attend HIMSS and share the patient voice with the healthcare IT Community. I thought this was a great idea and a really good step forward to diversifying the number of patient voices we hear.

As I’ve thought about this a bit, I decided that I wanted to do more to share the patient voice on my network of blogs as well. So, I decided to reach out to a number of patients and provide them a platform where they can tell their story. In some cases this will be about healthcare IT and how it impacted patients. In other cases it might just be a story about the healthcare system in general. Some will be good. Some will be bad. I told them that my goal was to add a little more of the humanity back into what we think about when we think about healthcare.

I’ve got a couple of these patient stories queued up for this week and hopefully we can make this a monthly (at least) fixture across the network of Healthcare Scene blogs. If you are a patient with a story to share, or know someone who does, we’d love to hear about it on our contact us page. I’m especially interested in hearing stories from lesser known patients. Hopefully we can use this platform to share more of the patient perspective. Be sure to let me know what you think of the patient stories this week.

A Patient Perspective on Meaningful Use

Posted on November 18, 2013 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.

I came across this great xtranormal video that looks at meaningful use from a patient’s perspective. I’ve posted some videos like this before. In fact, I’ve started creating a whole YouTube playlist of Funny Healthcare IT Videos. If you’re deep in the trenches of meaningful use, then you’ll enjoy this one (or not depending on how you look at it).