Do you have any______?

"Do you have any allergies?"  How many times have we had to answer this question?

Don brought up this question "why am I asked this question every time I go to the doctor even though I keep answering it the same way?"

I am sure we have all experienced this anytime we go to a doctor visit, urgent care, the dentist or emergency room.  We're handed a clip board to fill out all the same information; surgeries, conditions, allergies, medications, emergency contact etc.  This information floats around in stacks of papers that are called my medical records.  My stack is probably the size of a small monument at this point and I can't even imagine what my grandma's stack of health records looked like.  And most of it is the answer to these same questions.  

So what if I had control of this information in an accessible place that was easy to update?  Then the question might be how and what information is relevant?  Should I include any procedure including a ear flushing or stitches? What do they mean by conditions?  I get dry mouth at night...does that count?

But this is really my information and I should actually be in control of it, right?  Now full disclosure, I am horrible in keeping my immunization diary and remembering my vitals (cholesterol and blood pressure).  Shouldn't I know this information? It just isn't easy for me to remember to record this information and if I do remember to record it...where the heck did I put it?

The two questions we discussed; how do we create an easy place to record and keep my personal health information and how do I get the right guidance about what information is relevant?  File of Life and Plan In A Can both provide an avenue to do this.  Google also tried and failed to create a digital Personal Health Record (PHR) that would widely be accepted.  Is there a simple way to capture, safely store and access this information?  Why did Google Health fail?

NOTE: I like how St. Mary Mercy's Plan In A Can form is called the "Just In Case Card".  Language is important and powerful to create the appropriate association with something that can become associated with something negative, emergency, pain, suffering or even death.  

We decided to create some requirements for our version of this "Just In Case Card" or "File of Life".  We post our draft requirements here.  It also might make more sense to partner with either of these two organizations who have already developed the requirements, designed a form, vetted the form and have channels for communicating and sharing this tool.  

The information we thought might be relevant included:

• Advanced Directives
• Chronological surgeries, incidents and/or conditions
• immunizations 
• Prosthesis and implants 
• Doctor names, phone numbers and their specialty
• Insurance information
• Medication history - medications taken before that were; change, replaced or discontinued
• List of current medications
• Pharmacy contact 
• And of courses........Allergies

We also discussed some design principles for this diary/form/repository:

• Simple
• Not pages and pages (that would be daunting)
• Simple to update one portion and update other portions easily 
• Doable
• Feeling of accomplishment 
• Easy to keep and accessible for routine doctor visits, to update and in case of an emergency
• How does digital fit in?
• Builds knowledge and confidence 

1st Half of the Discussion - Routine and Purpose

The first half of our design session was recapping the previous weeks conversation about a totem and the recurring theme about the importance of routine and purpose when integrating medication into our lives.  This week I was at a conference and heard two of the speakers refer to this purpose/motives as personal goals. 

Don said "each person's routine is their own system and everyone's system is unique."  We can't expect every person to be given the same orders and directions in the same way and expect every person to understand, comprehend, and fit this into their vastly different person routines.  Example; a doctor may tell every patient who she prescribes Metoprolol to take it after breakfast in the morning by 9am.  If the patient doesn't wake up until after 9am or doesn't eat breakfast it is now implied they need to either change their routine to do what the doctor ordered or decide for themselves if or how they will take it.  Changing a person's personal routine is drastic and not sustainable.  Have you ever decided you are going on a diet; going to eat vegetarian, eliminate coffee and eliminate alcohol? This may last a whole day because these are huge changes to our personal routine and once we fail one of these things we quickly revert back to the routine, diet and habits we developed over time.

We decided it was necessary to have a set of questions that allows the medical professional, family or patient to understand their own routines, learning style, feelings and motives.  Knowing these allows us to develop our own sequence and learn how to fit doctor prescriptions into our existing routine so daily activities can reinforce this new sequence.  We created a rough draft here of the questions that might guide individuals, families, friends, caregivers, doctors, nurses or pharmacists to understand a person's routine, motives, and learning style to successfully involve, teach and integrate this sequence of health prescriptions.

NOTE: we found the concept of sequence to be more important and more fitting when talking about performing prescriptions at specific times of the day.  The exact time of day was not helpful as it implied that every patient has the same routine.

Also to further enrich our discussion I heard Dr. Eric Coleman who developed a program to train what is called Transition Coaches.  He had a few points that added to this discussion:

• We need to understand a patient's personal goals not assume we understand their goals or even health goals.  Personal goals are bigger and more motivating.
• Learning/Coaching is transferring Skills
• Transferring skills happens through simulation (patient being involved in hands-on learning)
• A feedback loop is important to gauge whether or not a patient has obtained the necessary skills
• We also need to be aware of medical professional's need for personal fulfillment when treating patients

Dr. Coleman used the analogy of giving a man a fish, which is fulfilling in the near term but not sustainable in the long term and teaching a man to fish which is more time consuming in the near term but more fulfilling and sustainable over time.  He used the quote from Ben Franklin to outline his method for transferring skills: 

"Tell me and I forget. Teach me and I remember. Involve me and I learn." ~ Ben Franklin

In addition to all this conversation about routine we discussed tying medications to activities in an existing routine.  See example below:

           Name|Dose|Use|When (the activity int he daily routine that the medication is tied to)

           Metoprolol|25mg|Lower  Blood Pressure|After eating breakfast in the morning

Finally, as another data point, I read the headline in Rock Health's weekly update

What takes up 50% more of a doctor's time than caring for patients, was supposed to save $77B for healthcare, just got a funding boost from CMS, and had sweeping changes proposed from AMIA last week? The EHR. A valuable tool or a total disaster? 

Then I read the twitter responses, mostly from doctors, who the EHR seemed to be their arch nemesis and a Washington Post article by Charles Krauthammer where he shared a quote from a doctor "the introduction of the electronic medical record into our office has created so much more need for documentation that I can only see about three-quarters of the patients I could before, and has prompted me to seriously consider leaving for the first time.”

Are we moving to a more decentralized and patient owned and directed health care model?  How important is this documentation?  And is it the doctor's responsibility?  Where does our community design fit in the current world and in the future?

Big questions....