Untangled Health

Consumers Unite To Drive The Changes We Need

Category: Healthcare tools and software

Open-Access Guidelines for Patient-Centered Care (The tools we need are here!)

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How do I find the best treatment for me? Is it my doctors choice? Do I have anything to say about it? Is it possible that my doctor is unaware of best treatments?

Taken from the British Medical Journal. Click link to view the Aortic Valve Replacement Guideline.“The BMJ launched an innovative strategy to promote patient partnership in 2014. It took this step because it sees partnering with patients, their families, careers and support communities, and the public as an ethical imperative, which is essential to improving the quality, safety, value, and sustainability of health systems.”


My suggestions:

Make sure you read the educational material your clinic gives you at the end of the visit then compare it with what you are able to find independently. This is most important when you are diagnosed with a new condition or your doctor recommends a diagnostic or surgical or therapeutic procedure. By the way, new medicines are therapeutic procedures.

Since errors happen…what I choose to call Therapeutic Misadventures I like to check out the current best practices and research outcomes published in Europe, Japan and the USA.

Cool Tools are here!  Everyone knows that I am a big promoter of physician-patient partnership when it comes to researching treatment methodologies and selecting interventions for our personal care-plans. I received notice today on the MAGIC projects publication of guidelines in the British Medical Journal. This particular guideline is for Aortic Valve Replacement. BMJ provides an online experience for doctors and patients called Partnering with Patients. The  content provided on the site includes best practice guidelines for many medical procedures. One source of the guidelines is MAGIC project.

This is an international group, originating in Oslo, Norway operating as the MAGIC project. Magic is an acronym for “MAking GRADE the Irresistible Choice,” where GRADE is a system to develop high-quality guidelines that consider the whole body of evidence on a certain therapy in an objective way, and incorporate patient values and preferences, as well as other considerations.

For the consumer this implies the MAGIC team applies a scientific rigor to weighting the evidence supporting the effectiveness of medical and surgical interventions. The real bonus is that they also employ the patient’s perception of effectiveness which can often be missing in research studies. A common example I like to use is change in mortality rate. Example: If I have emphysema and experience failure of my respiratory system I will die. However, there is a variety of life sustaining interventions available to me in the USA. These include: Supplemental Oxygen, inhaled and oral medications and mechanical ventilation. Virtually all people with severe emphysema are faced with making a decision as to the technologies they will use to extend their life. Many choose all three: Then again, I have had many patients in the past elect to not receive mechanical ventilation as the notion of being connected to a ventilator for the remainder of their life is not acceptable.

When any of us with chronic illness take advantage of a therapy I would hazard a guess that we should always take the pre and post treatment morbidity and functional status into account. Questions we need to ask must include the published guidelines reported changes in health related quality of life after treatment.

I hope these projects become the foundation for a curated library of best practice and treatment outcomes in the near future. Of course my preference would be to make them free for patients which might level the playing-field for those with low incomes in societies with huge disparities in care and health between the wealthy and impoverished. That said, as I learn more about the availability of the guidelines and find those that are free and unbiased by funding resource or error in design I will publish them here.

Have fun and educate yourself prior to making any decisions on how to manage your health.

Warmth to all of my friends along the way.


Here are link to Magic


The Onslow Magic Project for clinical guidelines



SalesForce as a Patient-Centered Longitudinal Care Platform | I am one happy Diabetic!

The technology facilitating Patient Centered Care arrived over ten years ago. It was all a matter of configuration!

The technology facilitating Patient Centered Care arrived over ten years ago. It was all a matter of configuration!

I am pumped!
Years ago…1997 I believe; I had a job working for DocSite: the company founded by Physiatrist John Haughton MD that became one of the premier Registry products used as the EMR community was attempting to define itself. In the DocSite product we collected measures or “clinical indicators” that were compiled around the patient and associated with an infinity of conditions. Essentially the data design allowed physicians and grant recipients to have a single patient record yet extract, analyze and report on any constellation of outcome measures without having to spend money on redundant disease registry products. Example: Blood pressure is an important measurement for diabetes and heart failure. In diabetes the measure importance is 1) how often it is done and 2) the blood pressure value. In Heart failure the same measures of process (measurement frequency) and outcome (BP value) are required but they might be different depending on the cardiovascular guideline and contrasting diabetes guideline. In the DocSite system the blood pressure recording was simply a vital sign. The rules defining threshold for compliance with guideline were defined separately and associated with multiple conditions. When the doctor generated the data for PQRI and the Cardiovascular Excellence programs a single patient outcomes dataset was generated based on the programs associated with the patient. When the patient returned to any clinician using the Docsite system the Visit Encounter Sheet displayed the current measures due, the last values and trends for each measure and gave the physician or extender a place to generate an education note. Inexpensive, simple, multi-user, modifiable for EBG and data submission automated through clerical “generate and send PQRI data”. Now, I owned some stock in the company so I am biased but quite frankly I thought the system was elegant once it received data feeds from pharma and labs!

All of us at DocSite used a Client Relationship Management cloud application in our client services department. After using it for three years or so those of us that had worked in a previous company “the forerunner of DocSite” called Cognimed all thought that Sales Force had the proper design to create a community wide care coordination and patient centered care planning tool We had built one in the 1990s and sold it and moved on with our lives.
Today I see SalesForce has entered the arena. Knowing what I know about its capabilities I hope they capture the market by landslide. Please if you thinking about building a new care management platform…dont. As a patient, I would love to see this thing as an App. in all of my clinicians hands and on my IPhone please. Check out their demo. I am sure it all does not work as advertised but I can attest to the fact that they had the correct data model ten years ago!

Reconciling data in my six health portals

Reconciling data in my six health portals

Hooray Humana for providing useful tools to family caregivers.



Lately I have complained about the lack of utility if not barriers created by various e- communication tools that seem to complicate the process of educating consumers on the topics within the domain of self-mastery.
After losing my poa agreement with my father, Humana finally
Let me know that I am now Pop’s designated healthcare proxy.
I find the letter engaging with plenty of contact info content and a promise to send me a care-advocates guidebook with accompanying educational material for visit preparation, medication reconciliation and financial management.
I will let you know how useful it is when received.

For now, a gratuitous thank you to a payer stepping into the medical home care team role with both patient and family!

A Chronic Disease Patient Reports On e-HR and p-HR utility


Reconciling data in my six health portals

Reconciling data in my six health portals

I will be attending the PCPCC annual conference next week and moderating a session on Do It Yourself Primary Care Medical Homes.

Most of my time of late has been attending to my ‘case’ as the demands of self-management are now more complex with the advent of new tools which were to lighten our load. Nowadays I spend at lease two hours each week keeping my 4 p-HRs up to date across four specialty physicians.

Why you ask? Well it appears that someone forgot to turn on the ‘interoperability switch’. I am sure it is here somewhere, I just can’t find it. I know the standards were written for certification purposes, I even have a copy of them. For some reason, here in metropolitan RTP North Carolina: Duke, Wake Med and UNC have all established contracts with Epic. The physicians that I use are independent and they have all chosen AllSCRIPTS and this is my patient experience.












I started out on this journey to reduce errors in medicine in 1997. Why are we still here? Please don’t blame it on Obama, Bush, Clinton; well you get the picture.

Here is my ‘secure message’ to my Medical Home

My recent note to my PCMH

My recent note to my PCMH


HIT at its best

Check out Telcare Cellular Enabled Diabetes Management Platform.

Now we have a example of a technology applied to address consumer and physician hassles.

One device for measuring, cloud storage, analysis and communication for the patient.

For the doctor: This could be the ultimate registry platform for diabetes specialists.

I am pumped…..well I use a pump but I was referring to something else.


Many Thanks to e-Patients –a time to reflect with gratitude.


An old teaching slide from 2008

An old teaching slide from 2008 


I want to thank my fellow e-Patient Casey Quinlan for recognizing my recent comment on e-Patients.Net.


“Frustrating it is; says Yoda”; that 2014 did not pre-date 1997. I had much more energy in 1997: Perhaps too much.



I reference 1997 as the year that I departed my work as a clinical program manager to work in e-Health. We didn’t call it e-Health then. Although Electronic Medical Records did exist; they were isolated to large hospital-like institutions such as the VA Medical Centers’ and were not designed to provide the functions available through modern ‘electronic health records’.

Many of us “early adopters” of information science could not understand why it was possible for Domino’s Pizza to maintain a record of our eating habits and deliver hundreds of pizzas to a locality throughout each football-weekend without a hiccup.: 1) pick up phone, 2) call nearest Dominos, 3) declare name and address, 4) authorize payment, 5) pace the floor for twenty minutes, 6) protect the delivery person by fending off eight hungry men from grabbing at the steaming-hot (well sort-of) pies in his hands and 7) laugh hysterically at your friends as they spill tomato sauce and toppings all over your ‘state of the art’ 300 pound 37” Big-Screen-TV.

You see, we could not understand why Domino’s had this technology; let alone the banking industry’s ATMs and long-time regular consumers of health services could not 1) count on the pharmacy ability to refill prescriptions without error, 2) count on hospitals and physician offices to keep our administrative and demographic information consistent between different clinics let alone the information most likely to cause therapeutic misadventure if not ported between points of care (allergies, chronic conditions and problems, medication dose schedules, history of procedures performed, emergency contacts, ETC.).

Those of us working to coordinate care and educate patients and families on the topic of Disease Self-Mastery commented “year after agonizing year” that “information is good medicine”; “missing information causes premature mortality” and “redundant information is expensive in both time and money”. The inability for a patient’s medical history to be stored for quick access and accurately portray the bio-psycho-social status of a person with chronic disease caused our clients to be branded as “revolving door patients”. Those who could not manage their own health-needs and were the reason for an exponentially rising National health care cost that policy-makers used to threaten future funding of our programs as we worked figure out the secret of the “secret-sauce”.

In 1997: Those of us attempting to manage our own disease, spent ridiculous hours each year documenting, forwarding, reviewing, speaking with new providers and writing checks to literally stay alive and productive for our families and employers.

Well, I would like to say it is all fixed! After-all, in 1997 we were in the era of the information technology bubble and the implementation of the World Wide Web so we left our clinical careers to work with “the geeks” to carve out a solution. We thought it would all be in-place by 2004! The problem you see; was that it took at least a decade to figure out what “the IT is” and what “the IT isn’t” and in –reality; in 2014 we realize that our issues were more related to “a social paradigm-shift” as opposed to the absence of technology. We are probably 50% there in terms of definition. We are 100% there in terms of technology and 25% there in terms of defining the rules and use-cases for the capture, digestion, analysis, transmission, and relevance ranking by work-environment to attaining the possible impact on e-Health to our collective experience, quality of life, safety and economic impact.

These apps ,, devices and vendors all connect to my HealthVault today.

These apps ,, devices and vendors all connect to my HealthVault today.

This year however is a turning point for us consumers that are the BIG-SPENDERS. By now you should note that your medications are ‘mostly (with sheepish grin on my face) correct between providers and that we can at least digitally sign and forward administrative and clinical documents between providers in milliseconds as opposed to weeks. Persons with diabetes, cardiovascular disease, cancer, asthma, head injury, auto-immune disease should be able to log-on to review all relevant clinical monitoring information, securely dialog with physicians and family members, download and upload data from home testing equipment, request refills and perform research whenever we are at Starbucks. There are some security glitches but if I can risk sharing my smart-phone with a shopping app. I can certainly use it to help me manage my healthcare.




I am retired now, slowed down enough to be ‘coined’ disabled but juiced-up enough to spend the foreseeable future gathering ‘consumer-power’ with my fellow ‘e-patients’ as part of this ‘e-society’; shouting out with my friend Casey, he nature of our needs and declaring the economic value of the products and services. After all, it is our game to change: Isn’t It!

PS: I do not have enough time and energy keeping-up with my blog. I do my best and return occasionally with a cerebral burp of two.  This is because finally, the world has a place for us: I am active as a volunteer with the Patient-Centered Primary Care Collaborative and make an extra buck or two pursuing a dream: The Diabetes Eyesight Preservation Program; where one patient convinced three physicians to treat anyone who needed treatment regardless of ‘ability to pay’!

Well, to be truthful: “They asked me what I was going to do with all of my time (tee-hee).”



Not an insurance company, just an empowered consumer.



My report for today:

Helped one more person register his family for an affordable insurance product using Healthcare.gov


Met friend at 4:00 for dinner prior to our club meeting. Turn’s out he is lost in acronyms and asked for help.

Over the course of the next four hours we improved his ability to self-advocate, submitted an application and lessened his anger and fear of OBAMACARE.

My objective was met by my friends eloquent ability to inform his teacher of the many reasons OBAMACARE should have never been named OBAMACARE and his understanding of healthcare as it differed from earlier in the day when he could only think of it as “the monthly premium “or the cost of a subspecialists co-pay”; or “a communist scam”.

We ended the night with one happy conservative family man receiving a quote for his silver policy for a family of three. The monthly premium is $200 less than last years and his services have increased.

As we concluded the evening he asked if I ever thought of inventing a software program that would track all important health information for patients.  He had evidently been responsible for a $4000 co-pay on an $18,000 ER visit for chest-pain. This was mostly due to his inability to articulate a thorough history to the doctors on staff.

I described to him the importance of maintaining a relationship with a primary care physician and then logged on to MyHealthRecord at Duke and MS Health-Vault to demonstrate the rather rough but much better communication I had with my physicians and interoperability of pharmacy and EMR systems. Then I described how these data could be used to empower a person in an emergency with timely and acurate information. His conclusion: Jeesh, I probably would not have needed the expensive work-up if the doctors had access to all these studies!

One more convert.

So little time….

But one more convert.

Tomorrow’s agenda: Meet with ophthalmology practice to organize diabetic eyesight preservation program for non-Medicaid, uninsured folks in NC. So far, I have the cost of a vitrectomy reduced from $12000 at a local hospital to $4800. Not bad for a days work!

Jeff Harris

Not an insurance company, just an empowered consumer.

Mostashari, policy committee take critical look at CommonWell | Healthcare IT News

Please read my comments. This material is important for consumers to reflect upon. Basically, the lack of partnership between healthcare IT vendors on the creation of information exchange and data protection standards places you at risk. 1) for leaking protected personal information and possible identity theft and 2) having wasted your tax dollar on the promises of a data exchange technologythat would decrease the likelihood of your suffering the effects of a therapeutic mistake.

As it stands now Oligopolies are forming which will make your data inaccessible unless it exists in the hands of big corporate America. Beyond that, it appears data are already leaking into commercial mailing lists.

Mostashari, policy committee take critical look at CommonWell | Healthcare IT News.

Step-up and submit your ideas to the private sector : Healthcare Information Technology Optimizes Hospital Experience

Information Quest has created a $100,000 competition which solicits ideas which will optimize the in-patient experience. So…all of you e-patients, patient advocates; geek-patients; participating patients: We have opportunities to actually influence product design. If you have ideas, your submissions could be the most valuable in the market for the creation of products you actually want to use!


Comments on health information exchanges and Personal Health Records

Living with chronic disease is a lot of work! Clinical Program Manager; Enthusiastic HIT Promoter, 40+ year Diabetic, Patient Rights Activist

As you know, I have written past article regarding the value of clinical information exchange and other what are now called Health Information Technologies that are part of health care reform. Ultimately, the goal is to come up to speed with other developed nations e.g. Taiwan, Germany, The Netherlands, Great Britain (take me a few years to complete the list). Why do we want to come up to speed?

Lets see: physicians have always counted on your memory as to the medications you take daily. If you see more than one physician they do not share the data. My primary care doctor (from Duke Medicine)  recently connected to a common resource called RxHub a part of the Sure Scripts empire. When I attended my appointment yesterday she suddenly had an additional ten medications which brought much concern to her face. We immediately reconciled what I was taking and what I was not. She took me off of one medication that was contraindicated thereby decreasing my risk for a drug to drug interaction.

So you see: The technology decreases my risk of suffering a cardiac arrhythmia (funky heart beat) and decreased my cost as well as my insurance plans! I said to Dr. Seo: ” My colleagues and I dreamed of these systems fifteen years ago it’s about time! Then a tear fell from my eye…….we can be so back-words for such an advanced nation!

Here are some screen shots of my data that I have connected to a free service provided by Microsoft:  Properly titled Health Vault

Here is the Website Image

Microsoft Health Vault a great place to store and share your data based on your decisions


When you set up an account you will be able to decide who you want to share your record with so YOU CONTROL THE SECURITY.

HealthVault connects to many electronic health records being used by your doctors and hospitals

It also connects to large laboratory companies like Quest

And of course to your pharmacy records in CVS, Walgreen etc.





 Here is my file

Notice I can use various tools like diabetes management software from other vendors

Notice I select who to share my data with

Notice I create my contact list thereby creating a virtual care team.



Here is the main “patient at a glance view:


Note, any care-provider or family member I give permission to will have access to:

My conditions

Measures I am following such as A1c or Blood Pressure

Files I have uploaded or downloaded

Medication lists (more on this later in terms of value e.g. Medications and Medications filled: Think about how someone would use this info to see if you have enough money to fill your prescriptions and take them as prescribed)


Here are some sample data on myself:



These are all of the conditions that I have

You can imaging how many physicians I see!




Here are prescription data fed directly to the system from CVS


So imagine you are in a car accident and have a HealthVault emergency sign in account in your wallet. As you lose consciousness from an obvious head injury the last thing you see before waking up in the ICU is your physician and ER staff entering the data into their computer, connecting to the WEB and getting an accurate picture of your conditions, medications, procedures and contacts to call.


Or I guess you could keep trying to fit it all on a 4X4 scrap of paper in the smallest font you can create.

So that is enough for tonight. I hope it whets your appetite and gets you on the track of storing your data in the cloud. We will be doing many more pieces on this in the future.


Think I will do more on economics and politics next week.

See ya

Jeff Harris