NoCA HIMSS Meeting in Fairfield, CA – supporting links

I will be in the social media panel at the Patient Engagement HIMSS meeting for Northern California. More details here:

First I will publish a few links related to my talk. I will then update throughout the day for a nice reference for all attendees.

I’m going to talk about:

– Regina Holliday’s Walking Gallery

– The Preeclampsia Foundation and its supportive Forum

– The Society for Participatory Medicine (SPM)

Main website –

Blog –

Journal of Participatory Medicine –

Twitter: @s4pm #s4pm

– e-Patient Dave deBronkart and his latest book Let Patients Help!

– Dr. Danny Sands

– SPM President Sarah Krug is Executive Director of Cancer 101

– Casey Quinlan Wrote Cancer for Christmas and strong social media presence

– Howard J. Luks, MD – Practicing MD with strong social media presence Also one of the founders of the Symplur healthcare social media hashtags project  

– Hugo Campos the ICD User Group 

– Kelly Young’s Reumathoid Disease blog

– Fibromuscular dysplasia Facebook group

– Christine Miserandino’s lupus blog But You Don’t Look Sick 


Farzad Mostashari’s Keynote at HIMSS

I’m going to start with the last session I attended at HIMSS13, Farzad Mostashari‘s keynote presentation on Thursday morning. This year I attended quite a few ONC presentations. In the previous years I was too angry with the lack of progress to be able to listen, but this year I sense progress in the air with the push for having the patient more involved in their care, primarily by pushing to give patients their data. 


Mostashari’s keynote was very thoughtful and interesting. It touched on a lot of thorny aspects of healthcare and demonstrated that the ONC is thinking about the real issues that confront clinicians and patients alike. 

He started with an articulated reason of why we are pushing for better and more data in healthcare: because it would help us use that data to make better decisions beyond our intuitive and often wrong beliefs.  He illustrated the point with a study in which male actors were interviewed on a breezy tall bridge by a female interviewer that gave them her number after the interview. Same experiment was repeated on a sturdy bridge. The people on the tall bridge called the interviewer more. Their brain interpreted the rapid heart beat with having feelings for the interviewer. It is difficult to judge the data in the middle of the fire…

He had calls for engaging the patient more often with one simple suggestion that I liked: ask your patients how are you doing. Doctors almost never hear from patients that left the practice. Did they leave because they are doing well or because they were unhappy or maybe they died?

The call for implementing health IT continued with a comparison between paper system and electronic systems. I thought this was a false problem especially for the HIT group: it’s not paper vs. electronic that is the problem, it’s bad (difficult to use, non-intuitive) electronic systems vs. good (helpful, easy to use, meaningful) electronic systems.


By the end of the talk he had great suggestions to make the right (and most common) thing to do easy and default, to create workflows that make sense and to MAKE PLANS WITH PATIENTS. 

He talked about how standardization is needed and a necessary step before studying variations. The variations should be used to learn things, they should be documented and recorded. His observation that “The Problem is NOT too much standardization in Healthcare” was received with loud laughter. It does sound good… now how do we go about making this easy for providers. Here‘s how bad processes can hurt people and cost more money in the long run. 


A Patient at the @HIMSS13 Conference

I am quite a dedicated IT person and e-patient. I love my medical data, I want my data and because I can’t yet get my data, I can at least hang out with the people that work on giving me my data and try to nudge them to give me my DAM data faster. So who do I get to hang out with?

– The HIMSS eConnecting to Consumers Committee – HIMSS is a very large Healthcare IT organization that brings together providers, vendors, consultants, government and, hopefully, in the near future, patients. The eConnecting to Consumers Committee aims to push Healthcare IT people and their organizations towards better engaging with consumers: patients, caregivers and families. The group organizes a yearly conference that I just attended last week. This year there was a great emphasis on patient engagement and I tried to attend a lot of sessions on the subject.

– The Society for Participatory Medicine (SPM) – is a non-profit organization that gets together patients, clinicians, and other people involved or interested in the healthcare system and in giving patients the tools and information to maintain their own health

I am volunteering for both groups and they recently became partners. I had to be there to see this in practice. The following blog posts will cover the education sessions I attended at the conference.

You will notice pictures attached to the notes – they are skechnotes that I drew/wrote during the session. I learned about the book/technique from a doctor blogger – Dr. Bryan Vartabedian – and it worked quite well for me. They are not very good sketches as I just started down the path. even so, I love rereading my notes which is  a first for me after a conference.



Patient-centric PHR/Portals

@devincfoster sent a tweet yesterday about PHR and Portals not being unused. It went like this:

@devincfoster: PHR/patient portals go unused… How do we make it so patients & drs actually WANT to use them?

It got me thinking… I want to use PHRs and portals. From a developer’s perspective this all starts with defining requirements, but from a user’s perspective it actually starts at the implementation – when I go in and try to use it,

  • Can I get in fast and easy
  • Can I find what I need
  • Can I remember the website a week or a month later

A lot of my doctors have PHRs and their PHRs have the framework for data and functionality that I am looking for (not pretty or perfect, but it exists). What is completely lacking in all of them is any support to access it and a person ready to listen to the patient’s needs/feedback.

If I had to start building a PHR, I would start with just one function, support my patients to access the portal and use that function and find out what is important for them. Then add another function, based on feedback, and support them again.

In my opinion these are the most important functions:

  1. Make appointments – find a date and time, ask how to send reminders, allow reminders set by email, phone by voice, phone by text, letter or entry in electronic calendar (ics file). In the beginning maybe double up to make sure the channel works i.e. send a text and then call in person to make sure they got the message.
  2. Allow the patient to enter their own data – history, chief complaint, etc. Allow them to see what you already have so they don’t have to enter it twice! Allow them to add their own data: documents, scans, spreadsheets, links to their data on commonly used applications (LoseIt, Fitbit, PatientsLikeMe, etc.)
  3. Share Summary of visit and physician notes in a patient-friendly format. Tune this continually to work for most patients!
  4. Share test results as soon as they are available
  5. Send reminders for patient tasks in the patient’s desired format – phone, text, email, etc.
  6. Send information, education messages on patients desired format and through social media

If I had this and I could access the website easily and I would have someone to help me quickly with the system when I get lost I would be a happy patient!

As a developer/marketer though, who would buy a PHR with just one functionality? I think a smart hospital should invest in a slow but steady evolving PHR with lots of customer support built in…



Medical costs – preexisting conditions and letting patients help

My S4PM colleagues Jeanne Pinder with the Clear Health Costs project and Casey Quinlan with #howmuchisthat for healthcare keep us updated on the popular topic of healthcare costs.

This inspired me to look into my own healthcare costs. I have good private insurance covered by my employer. Still my employer is forced to pay higher and higher premiums all the time and one day we will all have to do our best to reduce those costs.

I have ulcerative colitis. If Obamacare wasn’t around I could not get individual insurance if I needed it in the future. This is one of those preexisting conditions that make me uninsurable. Why? Let’s see my costs for two years 2011 when I was in remission and did not incur many costs related to my chronic condition and 2012 when I had a mild flare in terms of what can happen to ulcerative colitis patients. I did not land in the hospital and all I needed was some extra medication and a colonoscopy. I put the raw data in this file.

  • The costs for the uneventful year 2011 for me were $15 vs. $839 in 2012. Fair enough, I had a major procedure – colonoscopy that has a $500 copay and I needed medication with a few copays.
  • My insurance plan covered almost $700 in 2011 and about $6500 in 2012.
  • It gets interesting when you look at what the hospital/physicians claimed from the insurance plan: $4025 in 2011 and over $20,000 in 2012. This is what I would have to pay if I had no insurance – for basic care in 2011 and a mild flare in 2012.

Two costs jump out as outrageous: in 2011 my hospital charged us $2532 for basic tests (CBC, lipid profile, etc.). My insurance paid $176. This is almost 15 times higher price that I would have to pay if I was uninsured… Definitely gives me pause and makes me think twice about going to that particular hospital even though I love my doctor very much. They also charge a “facility fee” for each visit. Fortunately my insurance doesn’t pay that.

The second cost is the colonoscopy costs. First it is made out of four costs: actual colonoscopy, pathology, anesthesiologist and gastroenterologist. The anesthesiologist was paid more than my doctor or the pathologist that read the biopsy result.

I am an e-patient, so I care about costs. I am supposed to do a colonoscopy every year. I was willing to try to see how it feels without anesthesia. I asked my doctor and she said we’ll play it by the ear… There are other places where you are given options:

There are multiple sedation options – nothing at all, versed/fentanyl, and propofol/monitored anesthesia

I was not given options and I did not want to ruffle any feathers – you do not want the team to be surprised and make up a new protocol specifically to deal with you… (I can ruffle feathers now, after the procedure is done)

My hospital is trying to get as much money as they can by gauging the costs and making the most expensive option the default. It is a non-profit, but they are building a new wing and they are advertising the cyberknife.

My insurance company is actually quite good in how it negotiates good prices and is transparent and allows me to see all the information.

But wouldn’t we all be better off by working together? Doesn’t the hospital realize that the price gouging is pushing me away? Can the insurance company help me to reduce costs by requiring that I am given a sedation option?  Could we get better prices for my medication (it is  brand medicine and there is no generic available)?

Would we all be better off if I worked with a dietetician – I am doing my best to figure out what triggered the flare and avoid getting one again. Doctors usually say that flares come and go at random without reason, but it was my experience and a lot of other patient’s experience that we can influence a lot by avoiding certain foods. We know what makes it worse for us…

I think there’s a lot to gain if we all worked together. And I think I as a patient could help a lot if I was helped to understand options, costs and learn from other patient’s experience.

Definitions of patient-centric HIT and design thinking questions

My previous post on patient-centric e-Prescribe made my colleagues at the Society for Participatory Medicine to ask the more basic questions: how do we define patient-centric. They came us with a variety of links and resources that were posted on the blog:

On a related note, I ran into this article in the Government Technology magazine about redesigning government services and how design thinking can help. The whole article is worth reading. I quoted it extensively because their questions are so good… just replace government with healthcare system and think about this:


So here are 10 design thinking questions that you can use to reimagine government services.

1. Where are people getting stuck in the customer service process?

2. What is the citizen experience on filling out your forms?

3. What hours should you really be open in your buildings to meet citizens’ needs?

4. Does the language make sense to citizens?

5. How can design thinking reinforce employee behaviors you desire (healthy behaviors, customer service behaviors)?

6. Why are people not doing items you want, such as paying parking tickets? Is there a design flaw that could fix the problem?

How are people finding out about you? How can you optimize that?

8. What is the normal behavior of citizens when interacting with government? Alone or with family? If online, at home or at the library?

9. Where are the biggest pain points and frustrations in the process? Where can you decrease it? How can you increase delight?

What assumptions are you making in this government service? Are they still valid in 2013 with your current stakeholders and modern behaviors?

Remember when you had to wait to get the ATM card at the end of your transaction? Every day thousands of folks left their cards in the machine. One small change inspired by observing thousands of bank customers changed the process — now ATMs give customers their card back right away, saving thousands of frantic bank customers hours of getting their cards back. 


E-Prescribe – What does it take to make it Patient-Centric

I’m starting a series of posts on what does it take to make healthcare IT really patient-centric. If we started with the requirements, gathered from a patient, how would you build it.

It all started from a series of posts on Google+ Communities in which people mention that various applications are patient-centric. Maybe people do not realize what patient-centric really means… because I have trouble finding anything in our healthcare system that is really patient-centric.

I will try to address this from my point of view as  an IT savvy, healthcare obsessed e-patient and I will try to also think how it should be for a person that would check email once a day, but is scared of computers, technology, phones and wants the doctor to just tell her what to do.

How about e-prescribe – get the medicine prescriptions through a computer. Here’s what happens from a patient’s perspective right now!

– On the intake, the nurse or medical assistant asks me what is my preferred pharmacy. The options are that I know it quite well and she has it in her list. After a few fumblings with the pharmacy list, we can settle on the right pharmacy. The other option is that I don’t remember an address or even a name: that pharmacy that starts with Wal… One can easily see how the prescription can end up in the wrong place.

– The consultation goes on and my doctor settles on a medication to prescribe. If I am lucky and my doctor is open, I can look over her shoulder and visually check that this is the  medication I want, with the number of refills that I expect. We usually confirm my pharmacy one more time. If this is a new medication, I might not even understand the name, or maybe the doctor is using the generic name when I know the brand name or the other way around. Again, unless I look over her shoulder, it’s very easy to completely misunderstand what medication you got until you get that filled in at the pharmacy. Yes, one might ask a lot of questions from the doctor and the pharmacist, but this will not make it efficient.

– If I get a visit summary, I probably could see the medication prescribed and potentially remember to pick it up. I did not yet get any of those summaries, so i don’t know what information they contain.

– Assuming all is well and I don’t forget to pick up my prescription, I need to go to the pharmacy, tell the pharmacist my name and what I want refilled and 15 minutes later, I get it. As far as I know, there is no feedback to the physician – the doctor doesn’t know that I picked up my prescription or how many times I refilled.

I’m glad e-prescribe exists. But let’s accept it: it doesn’t fix much! It is a beginning, a good beginning, but it has ways to go! As Brian Pollack -a doctor – on the Google+ discussion mentioned: this is in its infancy!

So how should it be?

For a chronic patient that might have a few meds that work and he knows how to use them, I would give the patient a tool to

– Select the medicine and the amount (number of pills, bottles, etc.)

– Check prices at various pharmacies (there should be an app for that)

– Message the doctor asking for approval – doc should have at least a one year history of all the meds that patient is taking based on prescriptions filled in, Glow Caps or some other tool. Doc approves refills (maybe offline, in advance, with rules)

– Patient messages desired pharmacy and gets meds

For a new condition, doctor suggests a prescription for the e-patient:

– E-patient asks for options

– E-patient goes home and researches side-effects, how it works for others, etc.

– E-patient can message back and forth with doctor if he finds an option that seems better for him. Doctor can change the medications prescribed

– E-patient decides on an option

– E-patient checks prices and availability at various pharmacies (with information on copay from insurance company)

– E-patient messages pharmacy, pharmacy matches it with prescription from doctor

– E-patient gets the med she wants where she wants it

– Doc gets a message and note in EHR about the med and time of picking up the med.

New condition, patient is sick and wants a solution now, no time for research:

– Patient picks closest pharmacy

– Doctor sends prescription

– Medical assistant or nurse helps set up the patient’s pharmacy with the prescription

– Patient gets an email/text right away with all the info (can be visit summary)

– Medical assistant or nurse gets a note if med was not filled and calls patient the next day.

How does this sound?


We can do better

A few weeks ago, I had a really bad sore throat after a simple cold. It went on for about ten days. It was Friday, I was tired of the sore throat and I was afraid that if it won’t go away, I will be in pain all week-end.

I called my primary care physician/provider (PCP) office and begged for a same day appointment. They asked me how soon can I get there. 🙂 “20 minutes”, I said. “We’ll see you in 20 minutes”.

I got there, they did the registration quickly and I was “roomed” (weight, blood pressure measurements, a few questions from the physician assistant – PA). I was going to see the nurse practitioner (NP), not my normal doctor, which was perfectly fine for me.

The NP came in, asked a few questions about my cold, checked my lungs, ears, throat, and did a Strep test. She mentioned giving me Amoxil. She recommended lots of fluids, Tylenol, Advil, Motrin round the clock and Amoxil for ten days even before getting the results of the Strep test and call back if not OK by next week.

I was thrilled to get my antibiotic prescription, did not ask any questions and left. I started taking the Amoxicillin, and 24 hours later I felt better. A week later I was as good as new.

So how can we do better?

Reflecting back at the visit, while working on becoming an e-patient (engaged, empowered, enabled),  I realized that from the perspective of me as a unique individual, this appointment was bad in many ways:

– The meaningful use certified EMR did not appropriately flag the NP that I have ulcerative colitis UC (extra precautions were needed because antibiotics could cause flares) and that I should not take NSAID (like Advil).

– The NP completely ignored the fact that I have UC – we should have discussed if I really want to take antibiotics considering that I could get a flare (I am well aware of that and yes, I hurt so bad, I really wanted something). She should not have mentioned Advil – I’d like this to be written really high in my record, right under the drug allergies!

– I did not say anything either. As an engaged patient, I should have raised these issues. I was in a hurry, I knew what I want and I was pressured by the hurry in the office, and felt guilty and grateful about coming in on such a short notice.

What do you think? What should an e-patient do? How do we mindfully communicate and educate?

My favorite e-patient t-shirt and my favorite son

@yogileana in #epatient tshirt and her son – the result of being an e-patient #s4pm


Regina Holliday’s Two Stories Jacket and Preeclampsia Awareness Month


Regina Holliday #thewalkinggallery

One more time last night, I was in tears, tears of joy and disbelief. Tears that my baby is six, and as healthy as can be. Tears that he can sing and make jokes and play with his friends and be told by girls that he’s so cute.

It happens to me at every party and school concert and every milestone.

See, I have two stories in my mind all the time. Due to Regina Holliday and her #TheWalkingGallery I also have them on a jacket and I’m proudly wearing them at every health IT conference that I go to.

But back to my story… On my first pregnancy, I had preeclampsia. For me this was the disease that happens at the end of pregnancy and makes “them” decide to do a c-section instead of a vaginal delivery. Even though I was at risk for it, I was not told what to look for and what it is until I got into the hospital at six months with dangerously high hypertension. My first baby was stillborn and I was in the hospital really sick for another week after that.

One can imagine the fear, trepidation and amount of reading that we went through before and during our second pregnancy. My second son was delivered safely at 8 months and is as healthy as a kid can be. I still had high blood pressure throughout my pregnancy, but always knew what symptoms to look for.

 The Preeclampsia Foudation is an amazing organization where we went for information and emotional support. They are a source of engagement and empowerment of women to learn and know more about their health during pregnancy and beyond. It is Preeclampsia Awareness Month. Please head over and learn a thing or two. You might help a pregnant woman in her time of need!

A nice touch was the last ACOG meeting that recognized the importance of preeclampsia.