A 12-month study to explore how sharing doctors’ notes may affect health care has made way for the "OpenNotes movement", the idea that physicians should share their visit notes with patients electronically. I've included some slides below that detail the program, and you can find more information including a toolkit for implementing OpenNotes here: http://www.myopennotes.org/toolkit/?eid=#43

Do others think this is this an effective way to engage patients with their care? Does anyone have experience with OpenNotes in their practice? I look forward to hearing your thoughts!

 
A/Prof. Terry HANNAN
Replied at 5:56 PM, 11 Mar 2014

I thoroughly enjoyed the short video on OpenNotes. It reminded me of my early days of working with Warner Slack and Charles Safran in BID. The attached slides taken from the 1990s show how effective this system was even back them in capturing patients notes but more importantly the involvement of clinicians in entering clinical information i.e. CPOE.
In my own clinic I use a very rudimentary Word Template Summary Record that is Hyperlinked to a wide range of data and knowledge resources but most importantly the patient is provided with (e- or printed) and can contribute to (if they have email) the record content.

Attached resource:

Joaquin Blaya, PhD
Replied at 8:03 PM, 11 Mar 2014

This looks interesting, how does this connect with the organizations
electronic medical record? Because I think that would be one of the first
questions when thinking of implementing?

Also, have you seen any legal issues with this?

Richard Waters
Replied at 1:55 AM, 12 Mar 2014

Isabelle, thanks for sharing! It's a really wonderful part of the discussion on transparency and patient empowerment. I don't have any personal experience on this (I work at Harborview Medical Center but wasn't in the early studies that gave patients access to the notes). I'd love to hear others thoughts.

A few thoughts: the language used to allow for effective and efficient communication between health care providers isn't always best for patient-centered communication, of course. Are there losses by now using more patient-centered language in the EHR? Or should we aim to create a patient-centered care plan (using the appropriate language) that lives parallel to the provider-language care plan? How can we also reach out to our patients who may be less tech-saavy or non-English speaking, in order to avoid exacerbating health disparities?

Overall i think this is very exciting!

A/Prof. Terry HANNAN
Replied at 3:11 AM, 12 Mar 2014

Richard, I echo your comments to Isabelle but with an 'encouraging and not negating smile' one could ask in response to " the language used to allow for effective and efficient communication between health care providers isn't always best for patient-centered communication, of course. Are there losses by now using more patient-centered language in the EHR? Or should we aim to create a patient-centered care plan (using the appropriate language) that lives parallel to the provider-language care plan? How can we also reach out to our patients who may be less tech-saavy or non-English speaking, in order to avoid exacerbating health disparities?" what language are we using now?
I find that with the patient "sitting in front of the screen" they are more savvy than we think. They even correct my spelling and even "native language limited" people ASK for explanations of the text entered. Their "ownership" of their record is on the level of 'gold value'.
You may like to read some wonderful materials from the Californian Health Care Foundation such as "Care Without the Doctor"-attached.

Attached resource:

Isabelle Celentano
Replied at 11:23 AM, 12 Mar 2014

Thank you for all your thoughts and questions! I wondered some of the same myself. Joaquin- my understanding is that it's more of a pilot program as opposed to a software solution. The idea is that physicians are already taking these notes and, according to HIPAA laws, patients have a right to their entire medical record (including physician notes). The toolkit suggests ways of advocating sharing notes with patients through the practice's already-existing EHR and/or patient portal, or if the physician takes handwritten notes, giving the patient a hard copy. Here is a piece of the toolkit that explains this a little bit: http://www.myopennotes.org/wp-content/uploads/2014/02/opennotes_toolkit_ehr_p.... Would this be more effective if it was its own software solution as opposed to just a "movement" as they call it? Or would that just create more interoperability issues?

As for the language bit, OpenNotes advises that because of the HIPAA laws that allow patients full access to their complete medical record, physicians should already be taking this into consideration while completing visit notes. Is this realistic? Richard and Terry, I think your questions hit the weaknesses of this program on the head. The suggestion of a patient-centered care plan living parallel to the provider-language care plan is an interesting one. What do others think about this?

Joaquin Blaya, PhD
Replied at 11:45 AM, 12 Mar 2014

Ok, now I understand more. Here I am always advocating that software is the
smallest part of health IT and the first thing I do is ask about the
software :)

As I understand this "movement" is promoting the empowerment of patients,
so in that sense the software that would actually do the sharing could be a
Personal Health Record (PHR), of which there are many, including failed
attempts by both Microsoft's Health Vault and Google Health and Indivo
Health an open source project started at Harvard, so I definitely think
that a movement for the patients to want this is necessary.

As far as the living in parallel, I believe that this is the best way for
this to happen, in other words you have an Electronic Medical Record which
faces the clinical staff and organization, and a PHR which is for the
patients and they share data, and actually share in both directions, so
that if a doctor or nurse enters information into the EMR it goes to the
PHR and if the patient enters information into the PHR they have the option
of sharing it with the EMR of their choice. Now for that to happen there
are a huge amount of interoperability issues, but I definitely think that
should be the goal.

Have others have experience with PHRs or similar projects?


Joaquín
___________________________________________________________________
Gerente de Desarrollo, eHealth Systems <http://www.ehs.cl/>
Research Fellow, Escuela de Medicina de Harvard <http://hms.harvard.edu/>
Moderador, GHDOnline.org <http://www.ghdonline.org/>

Jess Kadar
Replied at 12:03 PM, 12 Mar 2014

We are close to releasing shared notes in our EMR at Iora Health as part of our collaborative care platform which we are building ourselves. Our goal is to share the entire patient record with patients through the patient application. There is some voiced concern that some notes may not make sense to patients, so we are starting by focusing on sharing a certain type of note we refer to as the "shared care plan", which is a note specifically written to orient the patient and the rest of the team around goals. It includes the visit agenda, patient goals, and plan. We will also be building a way for patients to add notes to their chart to self-report and contribute, as they are a core member of their own care team.

Given that our practice model is "high touch", our staff write notes and update patient records at any time between visits depending on touchpoints, conversations about, or events transpiring in a patient's life. We don't have traditional templated SOAP notes necessarily, because we are writing about patients well beyond office visit documentation. (We don't have a fee-for service model, so we don't have software that is overly-focused on documenting "billable" objects like office visit levels, procedural codes, etc.) We also have "tasks" associated with each patient. We are eager to get to the point where all data are shared, at which point we'll be happy to share out what we learn.

We already share the patient record on a shared screen in our face-to-face office visits. So the patient sees exactly what is being written and can correct staff as they type and help craft a better report of themselves. We already ask patients to contribute to their chart by asking them on their first visit to create a "headline" for themselves--- a short twitter-like headline that describes who they are as a whole person.

Re: clinical v. patient-centered language - we are still figuring this out, however we are trying to build a framework that supports both. One example of this is a free text field for "Issue" (what other EMRs may refer to as "Problems") -- the issue field can be auto-mapped to a clinical diagnosis term from a medical concept dictionary (which in term is mapped to ICD-9, ICD-10 and Snomed). The effect in the UI is such that the staff can record the patient's term, e.g. "Sugar Disease" alongside of the clinical term, Diabetes Mellitus. So the patient begins to learn clinical terms to empower them for their own self-management. The idea is that these terms and shorthand notations should not hidden or secret or only held by clinicians. It's something learnable by anyone. Alternatively, a physician can name an issue using shorthand like "SOB" and the patient can see that it's not an insult...but that it means Shortness of Breath. ;-) We are striving to build an EMR that demystifies medical jargon and brings patients into the fold.

dian marandola
Replied at 12:23 PM, 12 Mar 2014

As I read various posts, I am seeing potential solutions to the issue of medication reconciliation. Especially post hospitalization with need for homecare staff or primary provider reconciling meds. Any thoughts? Tax. Dian

ALCIBIADES BATISTA GONZALEZ
Replied at 1:00 PM, 12 Mar 2014

Thank you, Isabelle, for this wonderful discussion topic. I work in a reference hospital for women and children, located in David city, Panama. We only have handwritten records for all the patients and, when patients or legal tutors (in case of minors) want to obtain their records, they have to request it by a letter to the medical director and then, they will obtain a hard copy (after pay for it!). It is possible that they don't understand anything, not only because the language used to write, but because the doctors' calligraphy.

Panama has a law which indicate that the medical record is a patient property, and allows patients full access to their complete medical record. The hospital has a project to implement EHR and I will discuss with the project leaders the possibility of include this type of initiative.

A/Prof. Terry HANNAN
Replied at 6:24 PM, 12 Mar 2014

Jess, the following statement of yours elicits a rich vein of thought for HIT (EMR) systems interactions. "Re: clinical v. patient-centered language - we are still figuring this out, however we are trying to build a framework that supports both. One example of this is a free text field for "Issue" (what other EMRs may refer to as "Problems") -- the issue field can be auto-mapped to a clinical diagnosis term from a medical concept dictionary (which in term is mapped to ICD-9, ICD-10 and Snomed). The effect in the UI is such that the staff can record the patient's term, e.g. "Sugar Disease" alongside of the clinical term, Diabetes Mellitus. So the patient begins to learn clinical terms to empower them for their own self-management. The idea is that these terms and shorthand notations should not hidden or secret or only held by clinicians. It's something learnable by anyone. Alternatively, a physician can name an issue using shorthand like "SOB" and the patient can see that it's not an insult...but that it means Shortness of Breath. ;-) We are striving to build an EMR that demystifies medical jargon and brings patients into the fold."
Based on my experiences with e-health systems dating from the 1980s I keep 'seeing' elements of the "Summary Record" having many commonalities.
[1. Fries JF. Alternatives in medical record formats. Med Care. 1974;12(10):871-81. Epub 1974/10/01.
2. Whiting-O'Keefe QE, Simborg DW, Epstein WV, Warger A. A computerized summary medical record system can provide more information than the standard medical record. JAMA. 1985;254(9):1185-92. Epub 1985/09/06.
3. Bart S, Hannan T. The use of existing low-cost technologies to enhance the medical record documentation using a summary patient record [SPR]. Stud Health Technol Inform. 2007;129(Pt 1):350-3. Epub 2007/10/04.
4. Enterline J.P. LJRE, Blum B.I. A Clinical Information System for Oncology. New York: Springer-Verlag; 1989.]

There is the clinician input for "specification" that provides the disease coding and classification-"clinical decision end points".
There is clinician and now patient input-"less specific"-often as text and it is how we marry these becomes critical.
Often there is concern over the length and complexity of text inputs however brevity with clarity seems to be much better that standard clinician 'letters'. In one study some 60% of consultants letters were not read.
I hope this is adding value to this discussion.

Mary Nnankya
Replied at 7:33 PM, 12 Mar 2014

I agree that it is very important if not an "entitlement" for patients to be able to view the notes/reports entered into their files by clinicians. Although this is an entitlement in the UK, several clinicians are either un aware of this and consequently deny patients access to their files and like wise several patients/clients are unaware or too intimidated to ask for access.
Several occasions happen whereby physicians/clinicians write erroneous entries into their clients files. To get back to the point of discussion; Clients/patients do not always understand the abbreviations by their clinicians, only THEY the patients feel what is going on their bodies and feelings are very hard to describe often leading to mis-diagnosis by clinicians leading to patients suffering from illnesses which are treatable or preventable if diagnosed early . Clinicians should always make themselves available to explain in plain language what they write in patient files without making a fuss about a client/patient "daring" to even ask....open access consultation is a very helpful way of achieving this however most patients equally value the necessity of patient and doctor confidentiality..

Jess Kadar
Replied at 9:59 AM, 13 Mar 2014

Any time I think about this topic, I ultimately end up referencing this Seinfeld episode. It never gets old for me:
http://www.youtube.com/watch?v=pyossoHFDJg

Patrick Crisp
Replied at 4:36 PM, 14 Mar 2014

As a software vendor selling stand-alone Personal Health Record software, I have found the following:
To be able to effectively handle all the patient's health data, a stand-alone PHR really needs to be a complicated piece of software. Despite my best efforts, I have not been able to simplify my PHR to a point where a large number of individuals will use it. My PHR really is a slightly simplified version of my EMR. The result is that those who use my software are those individuals who have really complex health needs e.g. multiple medications, tests etc.

As as family doctor, I have found the following:
Most patients have no interest in entering their health data. They do want to see it though and they do want access to it. Also, they frequently want more than just access to the data - they want an explanation of that data e.g. via phone or consultation. I personally have no problem sharing that data with the patient. To go even further, I would like the patient to look at what I have written after a consult to confirm that I have got it right and that they agree with what I have written. I think that this 'shared' consultation record approach would reduce errors in interpretation of what a patient is telling us.

My idea of what could work is that an individual has a shared health record that can be updated by the EMRs used by various providers and the individual's PHR. But, not all data is shared with the shared health record - each system does have data that is private to it. That shared record is the record that is accessed in emergency situations. This does mean that someone needs responsibility for maintaining an up to date shared health record. In New Zealand, the GP has the responsibility to look after all the patient's data and would be the entity responsible for maintaining an up to date shared health record. Communication could take place via the shared health record e.g. patient recalls, patient request for a prescription, patient request for an appointment, test results and an explanation thereof.

An example of the above in its early stages is the Australian PCEHR system. In New Zealand there is another approach: Most GP practices in New Zealand use the same EMR and that EMR has a patient portal to its data. That portal (ManageMyHealth), allows limited patient access to their data and limited communication. Most GP practices do not use this system - there is significant doctor resistance to allowing direct communication from patients.

Thanks for the discussion

A/Prof. Terry HANNAN
Replied at 4:51 PM, 14 Mar 2014

Patrick, just a quick note. The Australian PCEHR is a "poor" model and functionally has severe limitations. It is essentially a document storage system. It is NOT a clinical decision support tool. In addition it has cost our health system >$1billionAUS and is very likely to be not supported by our new Federal government. It is an "imposed" model of HIT and essentially does NOT involved clinicians. More later if you would like. Terry

Rakesh Biswas MD
Replied at 10:35 PM, 14 Mar 2014

Thanks for this excellent discussion, I wonder if any of you have seen this
'Open-notes' system http://www.udhc.co.in/
that has been attempting to bring doctors and patients on the same page for
quite some time now. We have patients (non computer savvy but communicating
through hand written and scanned letters (again guided by a community
health worker) and doctors responding to the informational requirements in
the patient's letter by posting their inputs in an online closed discussion
forum, (closed to protect patient identity) as a double caution although
all patients are de-identified as per HIPAA before being posted to the
online forum). Here's a recent post:(Letter)
http://www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=1065,
(Discussion):
http://www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=1108
Terry it would be great to have you in our discussion forum for your
clinical inputs.

Rakesh Biswas MD
Replied at 11:06 PM, 14 Mar 2014

You can find both the records (patient hand-written-letter input and health
professional discussion inputs) in one page in the same patient profile
(shared earlier) here:
http://www.udhc.co.in/PROFILE/PATIENT/profile.jsp?patient_name=PEDILANTHUS736...

In the link above you shall find a structured template to it added using
OpenMRS (by Rajib Sengupta, Saptarshi Purkayastha and Shoubhik Bose who
designed the narrative interface and maintains the entire website). The
narrative informational inputs are currently thriving more than the
structured inputs. Saptarshi is also working on other ways to further
optimize these informational inputs and workflow and it would be great to
have all of their inputs here in this discussion. We have a growing number
of patient users driven by our pilot village in West Bengal, India and the
medical interns in our tertiary care institute in Bhopal, India

A/Prof. Terry HANNAN
Replied at 1:30 AM, 15 Mar 2014

Rakesh, I had a little play with this. It has some very positive features. Is it built from an OpenMRS XForm? It has a simplicity that should enhance clinician inputs (CPOE) however I had significant problems with the 'visualisation' of the medications after they were entered. I think as an 'end user' that would discouraging. Vertical display of each item. The element (drug name) is at the bottom of each order and there is a filed ?gender, at the top of each medication. Also is this from made for a 'set format' or can additional features be added? I hope I am reading the format correctly. Terry

Rakesh Biswas MD
Replied at 4:51 AM, 15 Mar 2014

Thanks Terry, Yes we have not really begun to utilize the structured
openMRS part yet ( as in the previously shared patient here:
http://www.udhc.co.in/PROFILE/PATIENT/profile.jsp?patient_name=PEDILANTHUS736...)
and it is more of a profile page now with zero inputs there (definitely not
meant for any CPOE but mostly meant for informational inputs tuned to
medical decision making rather than actual execution).

Our entire 'medical decision making' workflow is currently in the
semi-structured narrative interface as in the same patient's profile here
http://www.udhc.co.in/INPUT/displayIssueGraphically.jsp?topic_id=1108.

I have asked Saptarshi and Rajib to comment on the openMRS architecture
that we are using.

Saptarshi Purkayastha
Replied at 10:49 AM, 15 Mar 2014

Hi Terry,

As Rakesh mentioned, the UDHC platform doesn't use OpenMRS at the moment,
though a student (Harsha Siriwardena) in GSoC 2013 built a module to
capture patient narratives.
https://wiki.openmrs.org/display/projects/Patient+Narratives+Module+-+User+Guide
That module uses either XForms or HTML Formentry and will use structured
medical records.
This structured EMR is extremely useful for CPOE, Disease profile
generation for a population or other Health MIS stuff.

I feel for patient narratives (similar to radiology notes), we need
descriptive texts.
One aspect of narratives that we've heard from many patients has been
empathy of doctors/nurses etc, when patient's narrate something and health
professionals listen carefully...
This aspect is crucial for patient satisfaction that I think will be lost
in structured input. Moreover "functionally illiterate" patients will often
describe differently and in their own language lacking medical vocabulary.
The idea is to indeed transform (with human intervention from
clinicians/nurses) unstructured narratives into structured observations and
store them in OpenMRS.
We are resource constrained at the moment to develop the integration, but
thats our goal

Rajib Sengupta
Replied at 12:41 PM, 15 Mar 2014

Few points - 1. In India the notes by doctor (handwritten) is always shared with the patient in the form of a prescription. In-fact, the doctors generally do not have any copy of the notes retained with him/her (and very few of them have electronic health record - may be less than .001%, only few hospitals have electronic health record for in-patients only). Based on my discussion with few others , it is very same in most of the LMICs. 2. The patient narrative part is very important - which needs to be recorded (not only in the first visit but over time as verbatim as possible) - we call it as patient journey in ArogyaUDHC - This is applicable globally, as none of the EHR system/toolkits or whatever, provides very little importance to it. 3. Finally, most of the cases should be solved in a collaborative manner - not only the physicians (General Physician, Specialist) but also medical students, public health researcher, health librarians, community health workers - (and ideally, these discussions should be recorded and shared with the patient, to show the side of medical empathy, which is sadly missing for various reasons). - This problem is also applicable globally. With advent of social network, we need to have electronic systems, which implicitly does this.
The above are the few things that we are trying to do with the ArogyaUDHC platform (www.udhc.co.in). But as Saptarshi mentioned, resource constrain, is significantly delaying our development progress, where we wanted to re-architect the system on top of OpenMRS On the positive side though, with all it's limitation, the platform has been adopted by several physicians and has helped in the treatment of several hundred patients from remote villages of India (and also helped medical students to garner knowledge in difficult cases).

Joaquin Blaya, PhD
Replied at 12:36 PM, 19 Mar 2014

And if an organization wanted to take this system you've built and either
try to implement it or improve on it, is it possible to do so?


Joaquín
___________________________________________________________________
Gerente de Desarrollo, eHealth Systems <http://www.ehs.cl/>
Research Fellow, Escuela de Medicina de Harvard <http://hms.harvard.edu/>
Moderador, GHDOnline.org <http://www.ghdonline.org/>

Rajib Sengupta
Replied at 1:11 PM, 19 Mar 2014

Joaquin, Yes, we have all intention to release it under a open source license. But before that we really want to clean up the source code, modularize it properly and above all document it - the whole nine-yard to claim a platform opensource which can be reused and collaborated upon. We really want to revamp the architecture on top of OpenMRS (OpenMRS being the structured patient record). As such, if any organization is interested to collaborate, we will love to hear from them - we specifically required volunteer developer (will be ideal if they are Java developers, with experience in Hibernate/Spring/Struts and icing on the cake will be OpenMRS expertise)

Rodrigo Cargua Rivadeneira
Replied at 1:27 PM, 19 Mar 2014

Buenos días que buena idea Joaquin como seria el tema de colaboración no
soy experto en desarrollo, puedo apoyar en la definición de requerimientos
en la parte de ingeniería de software. tengo un poco de experiencia en
protocolos para salud y seguridad.


Rodrigo Cargua
"No existe falta de tiempo,
existe falta de interes. Porque
cuando la gente realmente quiere, la
madrugada se vuelve dia. Martes
se vuelve sabado y un momento se vuelve
oportunidad


2014-03-19 12:19 GMT-05:00 Rajib Sengupta via GHDonline <>
:

Isabelle Celentano
Replied at 1:15 PM, 11 Apr 2014

Many thanks to everyone who has provided their unique expertise on this subject so far! I thought I'd share an article I came across today announcing Kaiser Permanente Northwest and other health systems in that region of the United States have implemented the OpenNotes program, making physician notes available to patients earlier this week. Find the article here: http://www.healthcareitnews.com/news/kaiser-others-open-notes-patients?topic=08

It's great to see large, well-known managed care organizations like Kaiser and the Department of Veterans Affairs taking this step to provide their patients with greater transparency and the opportunity to be more engaged and in control of their health.

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