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Good Government – Office of the National Coordinator

By Consumer, Informaticist, Leader
I frequently write here about access to health information – necessary to just-in-time decision making, tracking status in meeting health goals, coordinating care among your health team – heavily weighted to individual action and team relationships. Effective communication within your finely honed health team is necessary, but not sufficient. You and your team still needs to access and share health information from all sources to coordinate your care. Much of health information sits in electronic tools: electronic medical records (EMR), personal health records (PHR), on the web, in smart phone applications (apps), and medical devices. We can share this information in emails and in the EMR, PHR and apps. Unfortunately, the tools often don’t link. They exist in different languages, requiring expensive translators (interfaces). In industry jargon, they lack interoperability. Often tools within one provider – a hospital, health care system, clinic needs these interfaces to work together. The problem is compounded when you see many clinicians in different systems, as I do. Multiple towers of Babel.  Read More

The simple form that could save your life

By Caregiver, Consumer, ePatient
I’ve posted often about challenges and frustration using the electronic medical record. Seth Godin (the one blog I follow every single day) wrote this:

The simple form that could save your life

Medicine is a data processing business. Doctors measure, notice and inspect, and based on the data they collect, make decisions and take action.

Alas, despite years of promises, online data storage in medicine is a mess. Whenever I visit a new doctor, I have to start over, from the beginning, to the best of my recollection. And I hate forms, so I leave stuff out, or forget things, or my handwriting is a mess.

Perhaps we shouldn’t wait for a universal solution.

This simple Word doc (Download file) (Google doc) will take you a few minutes to fill out. And, as you get older, you can keep it up to date. Every time you go to a doctor’s office, print it out and bring it with you. Keep one where you can find it. Make sure your kids or parents have a copy as well. (And, while you’re at it, forward a blank one or this post to people who will benefit from having one.)

No cloud security issues, no data format issues. An old-fashioned, paper-based sneakernet of your medical information. Over time, doctors will tell you what you should add or leave out for the next doctor, as you take charge of doing a better job of telling your doctor what your doctor needs to know.
Very frustrating to admit how right he is.

Engage! Will patient engagement achieve “warp speed” this year?

By Advocate, Caregiver, Clinician, Consumer, ePatient, Leader

Engage! Will patient engagement achieve “warp speed” this year?

A fascinating HIMSS LinkedIn thread started by Brad Tritle (@BTritle) on January 9, 2013, with 100 posts through January 23, 2013 by 46 Individuals (31 single post, 15 multiple posts) – 18 pages. The full thread can be found here. I had great difficulty categorizing and summarizing. I started trying to use the National eHealth Collaborative, Patient Engagement Framework: Inform Me, Engage Me, Empower Me, Partner with Me, Support My e-Community. The exchange was more: Culture/lifestyle, Experience/literacy/diversity/education, Reimbursement/incentives/cost, Community/coordination, Clinician engagement, and Access/technology/interoperability/portals. The thread included 24 links. They are compiled here. The extract can be found below. Here are some pearls: Read More

Open Notes

By Advocate, Clinician, Consumer, ePatient
What information is there about me in my medical record? There’s certainly diagnosis, medications, procedures, allergies, treatment plans, referrals, diagnostic test reports (labs, radiology, EKG, pathology). I have more access to that information these days through visit summaries given at the end of the visit and on the different portals my providers have. But what about the notes they write? What is in those notes? How the plan /medications are working, my mood, concerns about my safety or my ability to think clearly, questions I ask with the answers given, calls the clinician makes about me, calls they receive about me, their thought process as they manage my care.  I can legally obtain these notes now by asking for a copy of my full medical record, but its cumbersome, complicated, costs money, and very, very seldom done. The movement to give us access to these clinician notes through a patient portal is called, Open Notes. (for more information click here) The VA and several hospital and physician clinic systems have committed to Open Notes. A study in the Annals of Internal Medicine (click here) was done that found  Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

I receive some of my care at one of the Open Notes pioneering institutions, but I see no notes on my Patient Portal. I will ask next week when I see the specialist. I completely support the Open Notes initiative. I want access to anything about me. I do have some thoughts and questions though:
  • As a clinician myself, having read tens of thousands of notes, it’s hard work finding relevant information in those notes. Clinicians don’t all write in an informative manner. Abbreviations abound. It will be interesting to see how note writing evolves as Open Notes proliferate.
  • Can I challenge an error? This is no different than errors in my medication lists or vaccinations. I have tried to correct something in my record with no affect. This will continue to be a challenge.
  • Will clinicians continue to write about concerns with my safety and state of mind? Read more about this here.
Have you experienced Open Notes? What do you think about access to Open Notes?

Electronic Medical Record Design Challenge

By Advocate, Caregiver, Consumer, ePatient
The Office of the National Coordinator (ONC) of Health Information Technology (HIT) – part of the Department of Health and Human Services (HHS) announced the winners of the Electronic Medical Record (EMR) Design Challenge. See the winners here. The design goals included:

  1. Improve the visual layout and style of the information from the medical record
  2. Create a human-centered design that makes it easier for patient to manage their health
  3. Enable health professionals to more effectively understand and use patients’ health information
  4. Help family members and friends care for their loved ones

The categories include best overall design, best medication design, best problem/medical history, best lab summaries, and designs that challenges the judges. All amazing and artful. Take the time to at least scan the possibilities and compare to the EMR(s) you use.

I’m excited. Design is huge. These designs stretch my idea of the possible. Thank you ONC. However, I’m hesitant to get too excited. While design and format are necessary and important links in the chain for usable EMRs, they are not sufficient. The people with complex chronic diseases are heavy users of EMRs, often with multiple EMRs that don’t talk to each other (interoperability). I have info in 3 EMRs. Can these designs handle complex health issues? What is the bidirectional nature of these designs? Can e-patients and caregivers enter information and correct information? I would also like to hear more about how the winners involved patients and caregivers in the design? How will the designs adapt for non-English speakers? Will these designs help the relationship/communication with clinicians? Let’s follow this and see how these designs are implemented. Let’s look for the design backstories.

Data, information, knowledge, wisdom, action

By Advocate, Caregiver, Leader

I have written about data and research in recent posts. Readers generally understand about data that is in their electronic medical record (EMR), but several readers have asked me about my interest in patient centered outcome research (PCOR). How does this affect me?  Why your interest?  Let me explain: The field of knowledge management speaks of DIKW Hierarchy (Data, Information, Knowledge, and Wisdom). For our purposes Data are individual observations, sensations, or facts about our health – temperature, pain level, calories, etc. Information adds context and makes some sense of the data: getting warmer, less pain, eating more. More useful than data. Knowledge takes information further: lower fever + less pain + eating more = feeling better. Wisdom is the so what? Leads to doing the right thing. Data, information, knowledge, wisdom lead to Action. You’ve heard me write about Just-In-Time Decisions. I care about having the information and knowledge to make decisions about our health. Data is collected and reported about us by us and by others either directly or through technology. Our health team (patients, caregivers, clinicians) takes that data and turns it into information and sometimes knowledge. Research helps turn data about many people in similar situations into information and knowledge. Only patients and their caregivers step on to wisdom and action. So research can help us get to wisdom and action if:

  • it asks the questions patients and their caregivers ask about best health,
  • patients and their caregivers have access to the research showing what has worked and what hasn’t, and
  • it helps patients and their caregivers make decisions leading to action in their best health journey.

So, I follow and advocate for patients and their caregivers in the research world as I am able. I write about it to keep you informed and to stay grounded in what is important about research. You, my readers, inform my knowledge and wisdom, and guide my action. Thanks. Keeps it up.

Personalized Medicine

By Consumer, ePatient
Yesterday, I attended a meeting of the Personalized Medicine Coalition.  As defined by the President’s Council on Advisors on Science and Technology, “Personalized Medicine” refers to the tailoring of medical treatment to the individual characteristics of each patient…to classify individuals into subpopulations that differ in their susceptibility to a particular disease or their response to a specific treatment.  Preventative or therapeutic interventions can then be concentrated on those who will benefit, sparing expense and side effects for those who will not. In English: At this point seems like mostly genetic markers (referred to as variances) that point to specific treatments for some cancers. Helps the doc pinpoint chemo for a specific genetic make up of some cancer cells. The field is young. 13 examples of personalized medicine in 2006, 72 in 20011.

I found a group of scientists, clinicians, pharm reps, patient advocates, investors, and insurance companies. Very aspirational – full of the potential and possibilities of personalized medicine – much like the aspirations of big data and mobile health technology. Some meat, lots of motion. Well funded.
I was curious about how the patient was involved in #PersonalizedMedicine. Met @JackWhelan, an e-Patient who benefits from #PersonalizedMedicine – saving his life! Also met Brett Johnson @waroncancer from the International Cancer Advocacy Network. Genetic counselors work with patients. Sometimes the genetic testing discovers a variance without an associated treatment. A dilemma is whether to contact the patient/physician in the future as more information is learned. Researchers are challenged to go back to extract longitudinal data (data over time from the electronic medical record) from those patients with the newly discovered marker/variance. I didn’t find researchers/scientists well integrating e-Patients into their research process – but my sample was small.
An exciting area to keep tabs on. Do any of you have experience with #PersonalizedMedicine?

e-Patient’s Health Record. Which DAM data?

By ePatient, Leader
Paint me frustrated. In the forums I attend the conversation is almost never about what e-Patients need in their health record. Rather it’s about what the vendor and government communities feel is possible given the current state. Many studies exist about adoption of the Personal Health Record (PHR), but none of them address the usefulness of the data to us as e-Patients. The federal government has initiatives that could increase access to health information by e-Patients. A big step forward. The Automate Blue Button Initiative (ABBI) seeks to facilitate the exchange of health information. But again it’s out of its scope to consider data elements that aren’t already mandated by Meaningful Use. There is also a federal health design challengeBeing able to access your health information on demand can be lifesaving in an emergency situation, can help prevent medication errors, and can improve care coordination so everyone who is caring for you is on the same page. However, too often health information is presented in an unwieldy and unintelligible way that makes it hard for patients, their caregivers, and their physicians to use. There is an opportunity for talented designers to reshape the way health records are presented to create a better patient experience. The challenge has similar limitations as the ABBI. When I asked they said, “The focus of this challenge is to create a design that uses all the fields and sections that exist in Electronic Medical Record (EMR) systems today. The fields we listed come from the CCDA, a standard that all EMRs are building towards.”
Note: The CCDA (Consolidated Clinical Document Architecture) is a patient summary containing a core data set of the most relevant administrative, demographic, and clinical information facts about a patient’s health care, covering one or more healthcare encounters. It provides a means for one healthcare practitioner, system, or setting to aggregate all of the pertinent data about a patient and forward it to another practitioner, system, or setting to support the continuity of care. Its primary use is to provide a snapshot in time containing the pertinent clinical, demographic, and administrative data for a specific patient.
Mind you, this conversation is a huge step forward, but I am unable to engage in a conversation in these forums about what we e-Patients need in our electronic health records?
I have presented the following two scenarios and data sets that I first tried out here a month ago in Give Me My Damn Data:

1) Coordinating care – All of my health team has the same information to share amongst each other – primary care to specialist, specialist to specialist, specialist to primary care, and all to my lay care team (relevant history, allergies, medications, procedures, diagnostic study results, impressions, diagnoses, unresolved dilemmasnext steps).

2) Unexpected care – The information is readily accessible to whoever takes care of me in an unexpected situation when I can’t fully communicate for myself, like an Emergency Department. (Current medications and medications that didn’t work, allergies, doctors, procedures, relevant history, recent diagnostics studies, ability to communicate, ability to learn, caregivers, typical reaction to pain and the unknown, what works to relieve pain, inform, and calm me, and cultural and spiritual needs).

Seldom do the underlined items exist in even the best EMRs, never are they retrievable by me or my health care team. This isn’t good enough.

Help me present more clearly by sharing your thoughts in the comments to this post:

1) the scenarios in your experience where medical record content was critical to care 

2) the data set (information) the record should contain in those scenarios.

 Today the question is what. Next will be how – How do we move the industry to put all the information e-Patients need in the health record?

Care Coordination

By Advocate, Caregiver, ePatient, Leader
According to the September 2012 Institute of Medicine (IOM) report, Communicating with Patients on Health Care Evidence, 97 percent of those surveyed with chronic conditions agreed that their care ought to be coordinated. Yet, only 54 percent said that their care was currently coordinated. If asked is my care for MS coordinated, at first blush I’d say yes. But then I wonder how do I recognize coordinated care? Would it be that all my providers talk to each other, work off the same data set? I realize that I am the coordinator. I ask for reports from one be sent to the others. I keep each informed about what the others are recommending and prescribing. I have a great team. I am completely satisfied with their expertise, the relationships and communication with me, and my health outcomes.  My primary care doc takes her role very seriously. They all discuss options with me and seek out my personal goals and desires. They all have EMRs. Yet I am still the coordinator.  Without my active coordination my care would be fragmented and based on incomplete data sets. I don’t need more than that, because it works, and I am very stable and cognitively very present and engaged.  What if I weren’t? How would my care be coordinated?  Would my wife or sons take it over, would my primary care doc step up? Yes, they would.  Again, I’m very fortunate. I don’t see that coordinated care is the path of least resistance nationwide. It should be. How can it be?

Open Notes

By Consumer, ePatient
My mission is to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health. Working together means relationships and communication. Sometimes I wish I had more face time with the professionals participating in my care. Paradoxically, although my relationships with my professional team are strong, I don’t really want more face time with them, it’s too stressful. Also my brain is not at its best during my face time with them. I make lists of questions often forgetting to ask some. Then my wife asks a question after the visit I never thought of during the visit. Secure messaging/email has helped greatly, allowing me to ask those questions, receive reminders, extending the communication beyond the face time. The Robert Woods Johnson sponsored Open Notes initiative extends the relationship and communication further, making the professionals’ medical record entries available to consumers. See this month’s Annals of Internal Medicine article and the Geek Doctor’s and the Society for Participatory Medicine’s blog posts. Potentially, access to our professional teams’ notes could help engage and inform us more in our care. The challenges extending this demonstration project include providers writing notes that are understandable by and useful to consumers, readily accessible electronic records, and a mechanism to ask questions, comment, and correct. Very exciting potential here. Stay tuned. Have any of you read your providers’ notes?