Twin Post Day: Why n=1 Really Matters - A Conversation with Docs on Twitter

“”…the patient’s perception is the core of the interaction…” - @DrCris
“The patient will always tell you what’s wrong, you just have to listen…” - @KittKlaiss
This week’s successful post was going to be the long-winded, semi-elegant (or so I told myself as I spent nearly 2 hours typing it) diatribe on underutilized, subjective, individual patient narratives published below.
But something funny happened on the way to the forum.”
Article
Jen McCabe Gorman, Health Management Rx, 22 December 2008

Why the Focus on Personal, Experiential Care? The n=1 Manifesto

“If there’s one thing I could shout from a patient perspective next year - it would be this:
I want to be a “live node in the network” (slide 5/51 by mingyeow, on Slideshare).
And I want that node to carry more weight via its connections than via a rogue satellite orbit.
Disclaimer 1: This is a necessarily selfish orientation - because while I can posit what other e-patients will think of that statement, I can in no way guarantee the majority (or even many) feel the same way.
Disclaimer 2: In addition, I can’t speak for other patient orientations - as a ‘live node’ in the medical network, my data transmission may be either voluntary (willingly given during a conversation with a doc or via consent to testing/treatment) or involuntary (incapacitated or unwilling, via testing while unconscious for example).”
Article
Jen McCabe Gorman, Health Management Rx, 21 December 2008

How important is the narrative?

In one of my first blog entries, Thoughts on EHR, I wrote about the importance of the patient’s own story. In this specific entry I dealt with “historic” information that was crucial in treatment decisions.

In my speech for the ICUH conference in Baltimore, October 2007, I said:

“Only when linked to his medical records, both parts of the patient information, the scientific and the narrative can be valued against each other and complement each other. […] I therefore am strongly against separate PHRs; once again, in my view the EHR, should contain all information concerning the patient.”

Today, Betty Rabinowitz M.D. in her article “Speech Recognition and the Patient’s Voice” confirms the importance of the narrative:

“For my patient, a template “hypertension note” would have done my interaction with her a grave injustice because the patient’s narrative was central to this encounter. Understanding her story dictated the medical decision not to increase her blood pressure medication in spite of the unusually high reading.”

Lodewijk Bos

Speech Recognition and the Patient’s Voice

“I recently saw a 56-year-old woman whom I have followed for hypertension for more than 15 years. Usually bubbly and very positive, she seemed quiet and subdued, and her blood pressure was higher than it had been in a while.
With her electronic medical record open on the screen in front of us, we reviewed her medications, renewing her prescriptions electronically. The system offered no drug interaction alerts. Following an on-screen reminder, I alerted her that her mammogram was soon due. Then, looking at the electronic flow sheet of her blood pressure, I commented that her blood pressure seemed a little high. Her eyes welled up as she told me that she was “not herself.” In the last week, her husband had lost his job. We spoke about her fears of losing their home and her disappointment in the company that had employed him for many years.
Finally, she talked about her hope that he would find a new job, and about the friends and family that had reached out to them with kindness and offers of generosity. She seemed to brighten, and there was a glimmer of her usual demeanor when she said, “I feel a little better. Could you recheck my blood pressure now?” It had normalized.”
Article
Betty Rabinowitz, HHNMostWired, 29 October 2008

Electronic Documentation calls for Standardized Nursing Language

“Electronic documentation has called attention to the need for standardization of nursing terminology and ways to capture nursing interventions.
“Nurses’ voice is a weak echo of the medical voice,” says Marilyn E. Parker, Ph.D., RN, FAAN, professor of nursing at the Florida Atlantic University (FAU) Christine E. Lynn College of Nursing in Boca Raton.
When Parker’s community nursing practice began shifting to an electronic record system, she realized there were places for nurses to record data, such as vital signs or medical symptoms, but no place for them to enter interactions and relationships with patients.”
Article
Cougarnurse, UltimateNurse.com, 11 September 2008

Terminology

I have been reading Keselman et al. “Consumer Health Concepts that do not Map to the UMLS” [1]. Very nteresting indeed, although in my view it only scratches the surface of terminology and semantics problems coming our way. It is interesting to see from where they start:
The gap between lay and professional health terminologies has been long identified as one of the significant barriers to empowerment of healthcare consumers. Studies suggest that lay people have difficulty understanding medical jargon, and this affects their ability to search health-related websites, comprehend printed materials, and communicate with their physicians.” (page 4) You will find more on that on the Consumer Health Vocabulary Initiative website.

Read the rest of this entry »

Thoughts on EHR

Slowly the concept of Electronic Health Records (EHR) is gaining ground. However, not without many difficulties and an amazing silence from the side of the customer/patient.

Josh Seidman from PCHIT asked a very important question: “How much of a prerequisite is an EHR for implementing a PHR?” Absolutely, I would say, there is none without the other.
A couple of years ago it was deemed necessary, at least in the USA, to split the pure medical from the personal part, the so-called personal health record (PHR) (see Tang et al.). In my view this has been a very wrong decision. In stead of implementing a total record, including all aspects, the discussion has now begun how to link one with the other. It seems the world upside-down.

Read the rest of this entry »

Automated Acquisition of Disease�Drug Knowledge from Biomedical and Clinical Documents: An Initial Study

“Design: Biomedical literature and clinical narratives from the patient record were mined to gather knowledge about disease-drug associations. Two NLP systems, BioMedLEE and MedLEE, were applied to Medline articles and discharge summaries, respectively. Disease and drug entities were identified using the NLP systems in addition to MeSH annotations for the Medline articles. Focusing on eight iseases, co-occurrence statistics were applied to compute and evaluate the strength of association between each disease and relevant drugs.
Conclusion: This paper presents a method for acquiring disease-specific knowledge and a feasibility study of the method. The method is based on applying a combination of NLP and statistical techniques to both biomedical and clinical documents. The approach enabled extraction of knowledge about the drugs clinicians are using for patients with specific diseases based on the patient record, while it is also acquired knowledge of drugs frequently involved in controlled trials for those same diseases. In comparing the disease-drug associations, we found the results to be appropriate: the two text sources contained consistent as well as complementary knowledge, and manual review of the top five disease-drug associations by a medical expert supported their correctness across the diseases.”
Abstract
Elizabeth S. Chen, George Hripcsak, Hua Xu, Marianthi Markatou, and Carol Friedman, J Am Med Inform Assoc. 2008;15:87-98. DOI 10.1197/jamia.M2401

An Electronic Health Record Based on Structured Narrative

“Objective: To develop an electronic health record that facilitates rapid capture of detailed narrative observations from clinicians, with partial structuring of narrative information for integration and reuse.
Conclusion: Structured narrative has potential to facilitate capture of data directly from clinicians by allowing freedom of expression, giving immediate feedback, supporting reuse of clinical information and structuring data for subsequent processing, such as quality assurance and clinical research.”
Abstract
Stephen B. Johnson, Suzanne Bakken, Daniel Dine, Sookyung Hyun, Eneida Mendonca, Frances Morrison, Tiffani Bright, Tielman Van Vleck, Jesse Wrenn, and Peter Stetson, J Am Med Inform Assoc. 2008;15:54-64. DOI 10.1197/jamia.M2131

Towards automated classification of intensive care nursing narratives

“Background: Nursing narratives are an important part of patient documentation, but the possibilities to utilize them in the direct care process are limited due to the lack of proper tools. One solution to facilitate the utilization of narrative data could be to classify them according to their content.
Conclusions: Our results indicate that the free text in nursing documentation can be automatically classified and this can offer a way to develop electronic patient records.”
Abstract
Marketta Hiissa, Tapio Pahikkala, Hanna Suominen, Tuija Lehtikunnas, Barbro Back, Helena Karsten, Sanna Salanter� and Tapio Salakoski, International Journal of Medical Informatics, Volume 76, Supplement 3, December 2007, Pages S362-S368

Informal notes to support the asynchronous collaborative activities

“Background: Health care professionals� collaboration is highly important for the medical practice. Efficient exchange of information improves good cooperation, but remains complex, due to the diversity of the medical activities. Currently, the health record is mainly used to manage structured medical information. On the one hand, such structure supports treatment that requires the documented information. On the other hand, however, the structure also imposes constraints on narrative and conversational practices of health care professionals. They use other collaboration means through phone, mail, annotations and free texts for informal strategies of communication. We focussed on informal written documents. Two different studies provided us some materials: home care charts in the context of home care and annotations in the context of the hospital health records.
Conclusions: With our model of Communication Notes, we now dispose of a promising setting for managing all the informal and unforeseeable information produced by the health care professionals during care.”
Abstract
Nathalie Bricon-Souf, Sandra Bringay, Saliha Hamek, Fran�oise Anceaux, Catherine Barry and Jean Charlet, International Journal of Medical Informatics, Volume 76, Supplement 3, December 2007, Pages S342-S348

Formal Policies for Flexible EHR Security

Bernd Blobel and Peter Pharow
eHealth Competence Center, University of Regensburg Medical Center, Germany

Abstract

State of the Art methodologies for establishing requirements and solutions to securing applications are based on narrative descriptions about the use of available system, sometimes also dedicated to system components. Even nowadays new developments to ruling application security services by the use of predicate logic suffer from being administered manually. Therefore, security and privacy requirements cannot be properly met resulting in restrictions and fears for allowing the use of sensitive data and functions. Because of the sensitivity of personal health information and especially of genetic data with its wider implications beyond the original subject of care, weaknesses in guaranteeing fine-grained security and privacy rules lead to less acceptance or even the avoidance of essential information transfer and use. To overcome the problem, security and privacy have to become properties of the architectural components of the respective health information system. Embedding security into the systems architecture allows for negotiating and enforcing any security and privacy services related to principals, their roles, their relationships, further contextual information as well as other regulations summarized in formally modeled policies. The paper introduces the evolving paradigm of the model-driven architecture, first time also comprehensively deployed for security and privacy services in bio-genetic and health information systems.