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Personal Health Records examples in resource limited settings

By Naomi Muinga Moderator | 09 Mar, 2016

Are there any examples of personal health records(PHR) implemented or being tested for resource limited settings? Is there a place for PHRs at the moment?

It would be interesting to read of these experiences or the potential they provide.

Replies

 

nohemie mawaka Replied at 2:27 AM, 9 Mar 2016

I don't have the literatures to prove it, but I have some colleagues that did work in Kenya and Mozambique over that few years in maternal health, where they utilized birth registries to strengthen data capacity in resource limited settings. Countries like Rwanda, which will soon become a middle income country, utilizes cell phone to record patients information which is automatically stored into an electronic cloud platform shared in ministry of health.

A/Prof. Terry HANNAN Moderator Replied at 2:36 AM, 9 Mar 2016

Naomi, I think this route may help (especially being in Kenya) why not go to the AMPATH and OpenMRS Talk sites and ask? Terry

Joaquin Blaya, PhD Moderator Replied at 3:03 PM, 9 Mar 2016

Really interesting question. I did a quick search for PHR in developing countries and found these two documents, both for South Africa in 2014. One for an implementation of a PHR and the other about the perception of implementing a PHR, that could be of use. If you wanted to reach out to the authors and let us know how that work is going, I'm sure a lot of the community as I would be interested in hearing how it went.

Also, as Terry mentioned there was an organization that created a PHR from OpenMRS (https://wiki.openmrs.org/display/projects/Personal+Health+Record+Module+Enhan...) and there's a second effort (https://talk.openmrs.org/t/anyone-using-the-phr-module/3172/3)

Attached resources:

suzana brown Replied at 9:28 PM, 10 Mar 2016

Sorry to disagree but Rwanda is a long way from becoming a middle income country. Current GDP per capita is $769 (nominal) and $1784 (PPP). Its economic growth is impressive but the main industry is still agriculture so it premature to say that it will soon be a middle income country. It might take at least 10 or more years for that to happen.

Also, Rwanda uses Rapid SMS for health reporting but that is for emergency reporting and not stored in the cloud. The only cloud storage is OpenMRS but that is restricted to certain diseases (malaria and HIV) and not implemented in the whole country.

gaurav dalvi Replied at 2:00 AM, 11 Mar 2016

Naomi, why don't you check out this patient & doctor friendly free personal health records combined with disease diagnostic tool, remote monitoring facility - Mediklikcare (www.mediklik.com) solely designed for the betterment of doctor-patient communication and save time & money.

Naomi Muinga Moderator Replied at 3:19 AM, 11 Mar 2016

Interesting pointers everyone..and thanks for the openMRS links too!
the South African experience though seems to target a population that is already exposed to technology which then makes them an easy target to accept a PHR.

Are there other examples say maybe in public health facilities where a majority of the population might access health services?

A/Prof. Terry HANNAN Moderator Replied at 6:09 AM, 11 Mar 2016

Naomi. I was part of the cofounding of the project that led to OpenMRS so with the system as it is now is 16 years since that implementation and at that time the was not a "target a population that is already exposed to technology ". So the questions to be asked and understood are "how did they achieve the position you described in this phrase.
That 16 year history is an amazing story of eHealth / HIT evolution and adaptability. With the success of OpenMRS it is very easy to overlook its genesis.
Some citations:
Hannan TJ, Rotich JK, Odero WW et al. The Mosoriot medical record system: design and initial implementation of an outpatient electronic record system in rural Kenya. Int J Med Inf 2000; 60(1):21-8.
Hannan TJ, Tierney WM, Rotich JK et al. The MOSORIOT medical record system (MMRS) phase I to phase II implementation: an outpatient computer-based medical record system in rural Kenya. Medinfo 2001; 10(Pt 1):619-22.
Joseph K. Rotich, Ph.D., Terry J. Hannan, MBBS Faye E. Smith, M.S., John Bii Wilson W. Odero, M.D., Nguyen Vu, M.D5 Burke W. Mamlin, M.D Joseph J. Mamlin M.D., Robert M. Einterz, M.D. and William M. Tierney, M.D. Installing and Implementing a Computer-Based Patient Record System in Sub-Saharan Africa: The MOSORIOT Medical Record System. Proc AMIA Symp.2002.792-5.
Rotich JK, Hannan TJ, Smith FE et al. Installing and implementing a computer-based patient record system in sub-Saharan Africa: the Mosoriot Medical Record System. J Am Med Inform Assoc 2003; 10(4):295-303.
Abraham M. Siika, MBChB, MMed, Joseph K. Rotich, PhD, Chrispinus J. Simiyu, BSc, Erica M. Kigotho, BSc, Faye E. Smith, MA, John E. Sidle, MD, Kara Wools-Kaloustian, MD, Sylvester N. Kimaiyo, MBChB, MMed, Winston M. Nyandiko, MBChB, MMed, Terry J. Hannan, MBBS, and William M. Tierney, MD. An Electronic Medical Record System For Ambulatory Care of HIV-Infected Patients in Kenya. Int J Med Inf. 2004

Steven Wanyee Macharia Replied at 11:46 PM, 11 Mar 2016

IMHO, there isn't a clear and agreed upon authoritative definition of a PHR at least for Kenya. So whereas several efforts to implement PHRs have been attempted to with mixed outcomes, the environment to clearly support, regulate and nurture those is missing. This is now in the MOH's (eHealth Unit) radar.

Thanks.

Elaine Baker Replied at 8:33 AM, 14 Mar 2016

Hi, I work in Tanzania and have a keen interest in shared health record. A shared health record is mentioned in Tanzania's national eHealth Strategy but has not yet been implemented. The links about South Africa and also Mediklik are very interesting. I couldn't find much information about how widely Mediklik is used, and whether it links in with facility EMRs, does anyone know ? I have been having a look at Australia's system https://myhealthrecord.gov.au which looks quite successful on the surface in any case, it seems to me that there are so few developed countries that have implemented this successfully in a way that is integrated across facilities/providers, that it would be looking at developed countries or middle income countries too for positive examples.

A/Prof. Terry HANNAN Moderator Replied at 4:03 PM, 14 Mar 2016

Elaine, I am not sure where you obtained the information on the Australian MyHealthRecord because it has been one of the most significant implementation failures that I am aware of. I live in Australia. "Success" is what you may read on the government website but in reality it has become an implementation disaster costing well in excess of $1.5B Australian. There have been no measures of its success. It has been seen by many as a poor eHealth/PHR/EMR/etc, model . Terry

Elaine Baker Replied at 4:53 PM, 14 Mar 2016

Thanks Terry for that perspective. I only know what I can see online, which appears (on the surface at least) to be a system which hooks up to multiple different EMRs across the country and is EMR agnostic, operates according to defined data standards and where patients themselves have control over their own health record. However I don't have any insider information about it. In what ways has it failed or what are the problems?

Also are there other positive examples of this type of EMR-agnostic national shared health record system working anywhere else ?

Best wishes
Elaine

A/Prof. Terry HANNAN Moderator Replied at 4:56 PM, 14 Mar 2016

Elaine I am in a meeting and will post some links to this discussion later. One has landed in my mail just now

A/Prof. Terry HANNAN Moderator Replied at 12:56 AM, 15 Mar 2016

Elaine, I am not sure if you can access this online but it came our today from our AMA who also look at the PHR and eHealth from a different perspective to Health Informaticians. The following may help.
If the links do not open send me your email address to and I will cut and paste the postings.
1. https://ama.com.au/ausmed/govt-ignores-flaws-e-health-push
Also from a blog site.
2. http://aushealthit.blogspot.com.au/
Also if you look through the subject titles on http://www.pulseitmagazine.com.au/
for PCEHR amd MyHealthRecord

Elaine Baker Replied at 2:03 AM, 15 Mar 2016

Thanks for these links Terry. The main criticisms I can find in these articles are:

- the medical practitioners don't seem to like the fact that the records are patient controlled. "The clinical usefulness of the PCEHR was fatally compromised by the ability of patients to withhold or hide information, and the peak medical body said My Health Record was similarly flawed." I am wondering why the medical practitioners don't want to let patients have control over their own records?
- it was expensive
- it is opt-out instead of opt-in for patients

It seems that point 1 and point 3 are actually arguing in opposite directions - one for less control by patients, one for more control by patients. I guess in reality there are balances to be struck?

Are there any other issues that you see?

Would you argue against cross-facility patient-controlled shared health records in principle, and if so, why? Or would your argument be that in principle this is a good thing but there are issues with the Australia case, and if so, are there any alternative positive examples in other countries?

Best wishes
Elaine

Naomi Muinga Moderator Replied at 2:42 AM, 15 Mar 2016

From my quick skim of the articles I see a failure to engage with all possible stakeholders

"The adoption of My Health Records is also being hampered by a failure to engage with specialists."

This is usually a challenge with many IT implementations - the human factors.

@Steven do you think regulation of such implementations would help aid their implementation and uptake? I find that the regulations almost always come as an afterthought after a lot of implementation has began.

A/Prof. Terry HANNAN Moderator Replied at 2:48 AM, 15 Mar 2016

Naomi and Elaine, I am excited by your feedback. Would you like me to expand the discussion on our PCEHR (PCEHR/MyHealthREcord) and post some discussion points from various sides of the discussion? I can place mine (with all the biases :)) and those of others. I belive this project has important national and international lessons.

Naomi Muinga Moderator Replied at 3:02 AM, 15 Mar 2016

Sure Terry, that would be great!
The lessons learned would be great to have...

Elaine Baker Replied at 3:48 AM, 15 Mar 2016

Terry - yes I too would also be very interested in learning more about this case. Naomi - yes it definitely seems from those articles that a big complaint is not so much the system itself but rather that some stakeholders are feeling excluded and not engaged, ie issues of change management ?

Charlotte Hespe Replied at 4:23 AM, 15 Mar 2016

Hi,
I would like to have the opportunity to add my perspective to this very interesting discussion as a proactive GP user of the My Health Record.
I agree with Terry that up to this point in time, the Australian My Health Record has been an implementation failure.
The problem is not so much about it being a Patient controlled health record(although there has been a lot of discussion by some clinicians about their fear of really important missing data in the records if patients were to deny access to certain areas of their health records- the reality has actually been that when patients are aware of why they should ensure the record is accurate they are really really good at making sure it is accurate and up to date rather than inaccurate!!!) but instead, the problem lies in the poor utilisation of the data by other clinicians across the health system.
What I mean by this, is that GPs are responsible for uploading the Health record in the first instance. This is done in consultation with the patient and so all fields should be checked for accuracy (the record uploads Patient DOB, Medical history, Surgical history, Current Medications, Allergies and Immunisations) and is done during a patient face to face consultation
Once uploaded onto the website it is accessible to the patient and any clinician that they give permission to view it.
This is where the problem lies- no specialists or hospitals have engaged with the system and don't (or won't) access the health record. In fact many of the hospital IT systems block the Drs accessing it from inside their IT territory!!
The GPs then have reacted by saying they are not going to waste time and effort uploading the records if no one looks at them.
The other problem with the system is that the document is a static document and is not interactive with the health eMR that it was uploaded from and subsequently requires a new document to be uploaded every time there is a change in medication/immunisation etc. This means it is yet another task that needs to be done by the already overburdened GP- particularly in an environment where no one is even looking at it!!!!

I hope this is useful.

I am fully supportive of the My Health Record and as a GP am engaged in increasing the usability and uptake of use of the system.

Charlotte


Charlotte Hespe

David Cawthorpe Replied at 9:03 AM, 15 Mar 2016

Every human endeavor will be limited in respect to compliance and behavior which in turn will be directly related to not only understanding but need.

That's why I our first low cost no-system system TRACT
http://internationalgme.org/TRACT/IGME_TRACT_2015.htm

Having developed three electronic records over the last 16 years, One of which has been operating for 14 years without a hiccup with an implementation cost of approximately $30,000 and a $60,000 maintenance cost, I am always interested in patient contribution.

The discussion at hand largely illustrates the foibles embedded in any change related enterprise in established health care systems.

Interface design with appropriate business rules
is in my limited view the key. Of course business rules are the last aspect of design, so in my experience an outline of the salient details would be the following:
1. Indelible health record where in all scheduled appointments are recorded in order to identify data entry gaps.

2. Ability to apply formally to modify entries and correct errors.

3. Parallel entry for every encounter for patients and clinicians.

With this approach, the responsibility for having a complete record is shared between the clinician and the patient.

There is also the looming shadow of who is responsible for the entire system. While we were able to develop a system for upwards of one hundred clinics at very low cost, with all the appropriate security bells and whistles for protection privacy, over the same period of time the mothership has barely landed with an integrated trans provincial cost of several billions of dollars, and we still don't really have a highly functional integrated system that can like more than one or two hospitals. This in my view is been the problem, contracts with private companies invariably grind the public body into dust.

That's why I our first low cost no-system system TRACT
http://internationalgme.org/TRACT/IGME_TRACT_2015.htm

This application was first published in the 2011 world health organization compendium of emerging technologies (see website above), and is completely user-defined and portable so that both clinicians and patients can carry their own record around with them all the time and also store it safely in a location of their choosing. The clinician patient can simply exchange information in order for the record to be complete and the need for a centralized operator (govering body developer and overhead is largely excluded).

Advantages include patient feedback about treatment, clinician has ongoing evidence-based practice and the information can be easily centralised and pooled for the purposes of study and record.

It draws on the appreciative positive aspects of those who want to participate without any top down order. It works wherever there's uptake in by virtue of this is the billeting to go viral.

The main drawback is you still require some level of technical interface, however the overall cost of this is minimized, and the no-system system is virtually free.

Vince Felitti (acestudy.org) has also spoken in designing a record that resides in the cloud, which also has advantages.

Attached resources:

David Cawthorpe Replied at 9:20 AM, 15 Mar 2016

Apologies for the typos in the last entry: below find the same entry with some corrections

Every human endeavor will be limited in respect to compliance and behavior, which in turn will be directly related to not only understanding, but also need and acceptance.

That's why I designed our first low cost no-system system - TRACT
http://internationalgme.org/TRACT/IGME_TRACT_2015.htm

Having developed three electronic records over the last 16 years, one of which has been operating for 14 years without a hiccup with an implementation cost of approximately $30,000 and a $60,000 maintenance cost, I am always interested in embedding outcomes, which we've done, and patient contribution, which is possible.

The discussion at hand largely illustrates the foibles embedded in any change-related enterprise in established health care systems.

Interface design with appropriate business rules
is the key. Of course business rules are the last aspect of design, so in my limited experience, an outline of the salient details would be the following:

1. Indelible health record where in all scheduled appointments are recorded in order to identify data entry gaps.

2. Ability to apply formally to modify entries and correct errors.

3. Parallel entry for every encounter for patients and clinicians.

With this approach, the responsibility for having a complete record is shared between the clinician and the patient.

There is also the looming shadow of who is responsible for the entire system. While we were able to develop a system for upwards of one hundred clinics at very low cost, with all the appropriate security bells and whistles for protection and privacy, over the same period of time the mothership has barely landed with an integrated trans provincial cost of several billions of dollars, and we still don't really have a highly functional integrated system that can link more than one or two hospitals. In my view, the main problem has been contracts with private companies invariably grind the public body into dust.

That's why I developed our first low cost no-system system TRACT
http://internationalgme.org/TRACT/IGME_TRACT_2015.htm

This application was first published in the 2011 world health organization compendium of emerging technologies (see website above), and is completely user-defined and portable so that both clinicians and patients can carry their own record around with them all the time and also store it safely in a location of their choosing. The clinician patient can simply exchange information in order for the record to be complete and the need for a centralized operator (govering body developer and overhead is largely excluded).

Advantages include patient feedback about treatment, clinician has ongoing evidence-based practice and the information can be easily centralised and pooled for the purposes of study and record.

It draws on the appreciative positive aspects of those who want to participate without any top down order. It works wherever there's uptake in by virtue of this is the billeting to go viral.

The main drawback is you still require some level of technical interface, however the overall cost of this is minimized, and the no-system system is virtually free.

Vince Felitti (acestudy.org) has also spoken in designing a record that resides in the cloud, which also has advantages.

Attached resources:

Elaine Baker Replied at 9:30 AM, 15 Mar 2016

Charlotte it is great to hear your perspective as a clinician user of MyHealthRecord.

Some questions I have
- why don't the hospitals or specialists want to access the data? Is it not useful to them? Do they end up asking the patient the same questions as the data which is already in their shared health record ?
- have you yourself ever found it useful to access or download a patient's record when they transfer to you from another GP? Or do you prefer to ask the patient that information again ?
- are the records structured (eg pre-coded lists of diagnosis, medication etc) or just free text notes or both ?
- do the records contain pregnancy and childbirth information for women?
- it seems from your email that on subsequent visits by the patient, the system asks you to re-upload information which has already been uploaded before ? Or does it ask you to add to or update or correct existing information ? Do users see duplicate information ? (for example the same medical history data uploaded three times ?)
- do you find the records too detailed or not detailed enough? Do you think a smaller or bigger health record would be more useful ?
- Do you think shared health records have any value for clinicians ? ie would you recommend not having a shared health record system at all?
- If you think such a system is useful in principle, if you were designing this system, what would you do differently ?

Thank you for your time! It is really great to get a clinician's perspective.
Best wishes
Elaine

Niamh Darcy Replied at 1:00 PM, 15 Mar 2016

Just a quick note from some experience with EMRs and Providers/Patient input into their own healthcare....

General experience in several developing countries where we have worked through HSS efforts working with District Health Offices and Health Facilities (hospitals, health centres) to allow for citizen feedback or queries, to enable 'patients' to have more input into the health care system has often shown that the providers are not interested in getting patient input, nor do they think patients know enough to ask questions that could be answered through some kind of health citizen gateway where information and answers could be provided - whether the questions are about quality of care, better information so patients can improve their health without needing expensive prescriptions etc. There is often a perception by providers that patients are not educated and do not have the right to ask questions. So in most cases where we have implemented (from more manual to electronic) ways of integrating patients with providers in several developing countries the providers are not that interested and see this as somewhat threatening. And there is an urban/rural divide here so often in urban areas the providers are more willing to interact electronically through EMRs+.

Working with districts and Health Facilities with scorecards that included some element of citizen feedback therefore had challenges. In some other countries engaging in patient satisfaction surveys also patients generally are reluctant to say anything negative about health service provision because this might have impact on their or their families receiving health services in the future.

Some of this also ties to the fact that a lot of providers in public facilities in developing countries (and some in developed countries!) have their own private clinics and the public system is a way to recruit patients for their private practice so it is to their advantage to not share information through the public facility they are working in.

The District Health Offices and Regional Health Office also have a big role to play here in terms of what they want to see happen. While in some countries the national level can regulate use of EMRs/SHR it is at the lower levels of administration where there are some champions of doing things differently and if there is agreement or MoU between District Health Offices and Health Facilities (or regional/provincial) then there can be stronger push to move providers to use these systems.

Patrick Crisp Replied at 2:32 PM, 15 Mar 2016

My 2 cents worth:
I am a family doctor and a programmer writing personal and practice electronic health records. My most recent project is a cloud based diabetes management system that uses a single health record stored in the cloud and accessible by the practice running the system and the patients with diabetes. The patients can add to the record but what they can add is limited (eg. glucose levels, BP, weight, events, messages etc). The practice has control of the record. We have just started a trial using this system in our practice.
Based on my experiences with the above, these are my opinions:
1. Most patients do not want to control their own health record. There are some who are keen e.g. those with multiple conditions who need software complex enough to help manage their problems. The stand-alone, full-featured personal electronic record works well for these patients as they have total control. There are others who are determined to improve their health e.g. diabetic out of control who is really keen to get it under control and who want regular practice input. The on-line shared record works well for these patients. Overall, both these patient types are in the minority.
2. Personal health records are only going to work if the record is controlled by the healthcare gate-keeper. This would be the family doctor in New Zealand. All health care related information makes its way to the family doctor who is then responsible for keeping the record up to date. This means that the record is kept up to date. If you do not have this 'gate-keeper' then you are not going to have an accurate health record. Patients can add to the record (limited) but they cannot change or hide what has been added by the gate-keeper. Patients can negotiate changes or they can request that some information is confidential.
3. A common, comprehensive clinical coding system is required. Snomed CT is the only coding system that is comprehensive enough to be useful to all stakeholders.
4. Ideally, the records need to be dynamic rather than static. If I see a patient as a family doctor and I make notes and add medication. That needs to be entered directly into the record, not onto some intermediary system which is only partly saved onto the personal health record.

Thanks for this discussion

A/Prof. Terry HANNAN Moderator Replied at 4:16 PM, 15 Mar 2016

Niamh, your opening paragraph elicited ancient memories in my older brain. Professor L Weed had this published in a set of conference proceedings in 1989! I may have posted it before to GHDonline.

Prof. L.WEED – PATIENT
In the latter regard, I remember the day in a medical centre on a ward with a modern information system when they wanted to present a patient to me on rounds.
I said “ Do not present a new patient: tell me who is going home today”.
The nurse volunteered the name of a middle-aged woman who had Lupus for 10 years. I suggested that they give me 15 minutes with the patient and then they could return for discussion.
I asked the patient to tell me all about each of her problems. She knew very little about the medical problems.
“ Do you have a copy of your own medical record?”
“No”
“ Are all your medications in your bedside stand, and does the nurse come around at regular intervals to see if you are taking the right ones at the right time?”
“No. The nurse just comes with little paper cups with pills in them, and I swallow whatever is there.”
“ Do you know what a flow sheet is – what parameters we are trying to follow – what end points we are trying to reach?”
“No.”
At this point I called the staff back together and told them what I had found. Their reactions were:
“ We never give patients their records.”
“ We do not have time to give the medicines that way.”
“ It would not be safe to leave them her with them unattended- she is on many powerful drugs.”
“ The patient is not very well educated and I do not think she could do all the things your questions imply.”
I then said:
“ But you said she is going home this afternoon. She lives alone. At 2 PM you will put her in a wheelchair, give her a paper bag full of drugs, and send her out the door. Are you going home with her?”
“ No. Is her management at home our problem?”
“ You just said she could not handle it – who will do it?”
“ The patient may not seem well educated or very bright to you, but what could be more unintelligent than what we are doing?”
We must think of the whole information system, and not just infinitely elaborate on the parts that interests us or fit into a given specialty. Patients do not specialize, and they or their families are in charge of all the relevant variables 24 hours a day, every day. They must be given the right tools to work with. They are the most neglected source of better quality and savings in the whole health care system. After all:
1. They are highly motivated, and if they are not, nothing works in the long run anyway.
2. They do not charge. They even pay to help.
3. There is one for every member of the population.”

A/Prof. Terry HANNAN Moderator Replied at 4:20 PM, 15 Mar 2016

To all who are contributing here and to others who may wish to contribute please keep posting to the discussion. It is evolving in a very exciting direction. Because of this I am working out how to initiate a discussion on the Australian system with differing points of view so we can all learn from each other. Thank you.

Elaine Baker Replied at 2:18 AM, 16 Mar 2016

Thank you for the perspectives you have given Patrick
1) on the issue of most patients not wishing to control their records but a minority of patients being keen and benefiting - I think it makes sense in this circumstance to have the functionality available that patients can control their records, but if they choose not to, they simply grant blanket read and write access to their chosen healthcare providers ?
2) While the system of one single "gate-keeper" provider for each patient may work well in New Zealand, I don't think this would work well in Tanzania where patients don't have a "family doctor" but rather see different providers at different facilities for different purposes
3) I think there is widespread consensus that use of international standards like SNOMED is the way to go
4) EMRs vs shared health record - different health facilities and different health programs do use different EMRs and other applications (eg hospital administration systems, mHealth applications). I think that trying to force one single EMR on many different facilities and different health programs with different needs is unlikely to meet their needs. In this respect, I thought the approach (as appears to be in Australia) where you have a shared health record and ways to allow all these EMRs, mHealth applications and other systems to be interoperable with (upload to and download from) the shared health record, seems like a good solution to me. You could also have a "direct view and entry" interface for providers who do not have or use any EMR or other application.

Look forward to your further feedback and also the continued discussion from participants.

Best wishes
Elaine

Patrick Crisp Replied at 4:33 AM, 16 Mar 2016

Thanks Elaine

You are right, the family practice as the gate-keeper does depend on having a health system where the patient chooses a specific family practice and can only be affiliated to one practice at a time (although can still be seen at other practices). The family practice does not need to be the gate-keeper though - it could be another health organisation e.g. nurse led clinics in low resource situations, a local hospital or a HMO but the idea does depend on only one health organisation at a time being responsible for the data.

I do want to say that even though I do not think that the patient should be the gatekeeper, I do think that patients want access to all their health data. I do think that they want to be able to add to their health record, view test and referral results, request repeat prescriptions, book appointments, communicate with their providers etc.

You could argue that a well designed and comprehensive electronic health record together with the organisation responsible for the design and maintenance of the health record are the gatekeepers. This could be the government. I think that this approach could be a problem if health professionals are not the ones in control of the data. Looking after health data takes significant expertise, time and effort and if it is not in the interest of the gatekeeper to put in that time and effort then the system is going to be flawed.

To keep multiple EMRs, there are 2 options that come to mind:
1. A database that stores a patient's health summary. The EMRs in use are not affected. They just need to be able to update the summary but most data is still stored in the EMR database. This seems to be the system that Australia has chosen. Correct me if I am wrong.
2. A database that stores all of a patient's health data. EMRs access this database via an API. They may have local storage but all data is stored on the one central database. There systems have to be compatible with that specific database format.

For me, the problem with option 1 is that you cannot be sure that all relevant data makes its way onto the health summary. This is a real problem if you don't know the patient. Also, if you want to analyse large volumes of data for trends etc. , you do not want a possibly inaccurate summary of the data, you want all the data and you want it to be as accurate as possible.

The problem with option 2 is it would require a huge effort to implement. Less of an effort if the relevant country is new to using electronic health records. But, there are huge benefits to having all the data available for analysis.

Thanks for the discussion
Patrick

A/Prof. Terry HANNAN Moderator Replied at 4:39 AM, 16 Mar 2016

Patrick, this is a fantastic posting and adds to the other also significant postings on this topic. I am working on a set of points about the Australian system that will post various points of view and a clarification of our system's PHR project. The great value of this discussion that began with Naomi's simple post is that it encouraged people to voice their ideas and knowledge. At the moment my elder brain is having trouble keeping up with the ideas and comments posted. More later. Terry

Goncalo Castro Replied at 5:47 AM, 16 Mar 2016

Dear Patrick

There is also option 3 which several health systems in Europe are pursuing
(Switzerland as an example): centralized registries of patients,
professionals, facilities and selected patient 'clinical documents'.
keeping the clinical documents stored at the individual care providers,
but referenced at the central registry and accessible from there.

Concerning option 2, I believe only small health systems managed to
implement such a system that records "all of a patient's health data" ...
e.g. in Estonia.

Charlotte Hespe Replied at 8:05 AM, 16 Mar 2016

Hi Patrick,
Thanks for your posting- very helpful to aid in thinking about the options.
The Australian option is not quite the option 1 described, it is actually more like what Gonçalo is describing for Switzerland.
You are right that the EMR is not affected by what is posted up into the health shared record, and it's accuracy is affected by the "gate keeper" who needs to ensure it is regularly updated but it is also a repository for other health data information such as:
1. Pathology tests
2. Prescriptions
3. Visits made to Drs and Allied Health who have been paid under the Australian medicare system (allowing an audit trail of where the patient has been seen under our health system)
4. Discharge summaries from Hospitals and A&E departments.
Currently the set up for the data deposition is clumsy and not easy to navigate but does give more information than just the Health summary as I had earlier described.

( Elaine, I will post answers to your queries in a separate message)

Charlotte


Charlotte Hespe

Charlotte Hespe Replied at 8:27 AM, 16 Mar 2016

Hi Elaine,
Here is an attempt at answering all your questions about the Australian My Health Record.
1. Hospitals and Specialists have not had any incentive to access the data due to a couple of reasons
A) Penetration of the market: we have not yet reached the critical number of patients who have Health summaries posted onto the system which means the vast number of their patients do not have the information there yet anyway
B) Systems issue: The Hospital IT systems are set up to have so much security around them that it is actually not possible for the Drs to access the My Health Records from inside the hospital community
C) Culture: Most of the specialists have been very slow to adopt IT so don't think about using the computer for patient records- they use paper records and want a paper referral etc etc
So yes, the patient has to answer all the same questions to provide all the data that is in the shared records!!

2. I have personally used the system to download a health summary and it is useful- the limitation is that it is just a summary but the important information that is key to their ongoing care is all there!

3.The record is well structured and very easy to read. The medical information is all coded but there is also a field attached to each Medical diagnosis/ condition where free text can be imported that gives the Dr an ability to provide explanations about the diagnosis (such as what hospital and specialist is overseeing the medical care)

4. There is no information about pregnancy or childbirth unless there has been a recordable medical issue that occurred such as LSCS, Post parturition haemorrhage, Pre eclampsia , gestational diabetes

5. When medical data / information needs to be updated a whole new summary needs to be uploaded. This is not difficult- you just edit it from inside the EMR and then it gets uploaded as a new document.
The patients My Health Record will then contain all documents that have been uploaded- with a date trail so you can easily see which is the most recent document

6. I think a shared health record is key to achieving the triple aim of primary health care: Better patient experience / Better health for the community / Decreased cost
However for it to be really successful it needs to be better integrated into the EMRs to ensure that everyone is using the same data in a timely accessible manner.

7. In my ideal world we would all be sharing the same health record! Accessible by the patient and accessible by all the clinicians and health workers as needed to provide health care to the patient.


Charlotte


Charlotte Hespe

Ammar El Seed Replied at 10:24 AM, 16 Mar 2016

Hi All,

Thought I would another example of a push for a nationwide health record system; the Taiwanese "My Health Bank":

http://www.nhi.gov.tw/english/index.aspx

Attached resource:

Hannah Faal Replied at 5:51 PM, 16 Mar 2016

Prof Weed
Terry, I belong to the ancients and this entry is music to my ears. In fact
I propose that we can only be good clinicians after we are completely au
fait with being patients. The terms I use are precontact, contact and post
contact where the contact period is the period between the patient and the
provider of health services usually the clinician. At all times the patient
is almost absolutely in control except the very short periods spent with
the clinician during the contact period. The records system must be
designed in recognition of this reality and made seamless between the three
periods.
I do not have ready answers but working from this premise and priority, I
am sure the technology now exists to overcome whatever privacy issues may
arise.
So maybe the issue is not being patient based or clinician based etc but a
seamless health record system friendly to patient and provider.

A/Prof. Terry HANNAN Moderator Replied at 9:02 PM, 16 Mar 2016

Hannah, yourself, Charlotte and others are adding immense value to this discussion. I hope that over this weekend I can take some of the topics and ideas presented with some of my own ideas and present some 'targeted' ideas that people can fire arrows or bullets at to add additional value to these interactions.

Steven Wanyee Macharia Replied at 3:23 AM, 17 Mar 2016

Great discussions!

With regards to data exchange, I'm sure we are aware about insightful global initiatives like the OpenHIE. PHRs also have a place in the OpenHIE.

Thanks.

Naomi Muinga Moderator Replied at 3:37 AM, 17 Mar 2016

I have really learnt a lot from this discussion...more than I was expecting thanks to all the contributions so far.

Is there anyone with links(similar to the south african examples) to resources that share the perspective of the patient and the doctor? Maybe what I should ask is :
1. Are there formal studies done to determine whether the patient wants a PHR in the first place and what they think it could do for them?
2. Is there any formal work done to get the views of doctors who are expected to use these shared records?

Interesting what Prof Weed brings to light...that the relationship between the carers and the patient is not that rosy at the moment in terms of dicussing the patient's condition and care plan. So when we put in the PHR in the patient's hand what value does that add?

Elaine Baker Replied at 5:07 AM, 17 Mar 2016

Thanks for the Taiwan links Ammar. From the resources online, it looks like the records get into the system through insurance - so when claims are made, that data is stored by the insurer, and now they are giving patients access to download the records from the insurer. Not clear whether the records get into the system via EMRs or through submission of paper based insurance claims which are entered in the system by the insurer? It seems Taiwan has a single national health insurance provider? It also seems like the way that providers can access a patient's records from other providers is by the patient showing the provider the records on the patient's smartphone or by the patient printing out the records and bringing them to the provider, ie providers don't have direct access ?

A/Prof. Terry HANNAN Moderator Replied at 8:38 PM, 17 Mar 2016

All on this discussion list, I am currently reviewing a document and this is one of the cited references (probably another to come later from the same authors) that seems relevant to this discussion. I hope it is of value. Terry

Naomi Muinga Moderator Replied at 2:26 AM, 18 Mar 2016

here's the ref Terry is referring to:
link : http://www.ncbi.nlm.nih.gov/pubmed/23287413

Attached resource:

Naomi Muinga Moderator Replied at 3:06 AM, 21 Mar 2016

Another resource to add to this discussion(Thanks Terry!) :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2732241/

Attached resources:

Cynthia Scott Replied at 12:58 PM, 25 Mar 2016

Hello Everyone,
I just want to add a little perspective that I have not heard expressed although maybe it is considered an unspoken principle in this discussion. In many resource-poor countries where I have worked in health care, there is not the same commitment or legislative backing to protect privacy. Confidentiality and informed consent is not standard practice. Since I work primarily in gender-based violence, mental health, and child abuse, I see that most patients would be in danger if a relative (who is a health professional or even well-intended care-giver) had access to information. Women and children often have no rights and their health suffers immensely, so any system put in place needs to first assess the cultural/socio/political barriers that could cause harm to our patients.
Cindy

A/Prof. Terry HANNAN Moderator Replied at 5:35 PM, 5 Apr 2016

All, this is a late additional posting on this topic. The following link is from an Australian blog site managed by a senior health informatician and reviewer of HIT/eHealth in Australia. Dr More has posted the latest figures relating to the use of the My Health Record in Australia. They highlight the poor correlation between implementation costs, functionality and use. Terry

http://aushealthit.blogspot.com.au/2016/04/it-seems-clinicians-are-still-not-...

Yudha Saputra Replied at 12:15 AM, 6 Apr 2016

Prof Terry,

On your reply in (no. 25), the situation where patient sent to home after hospitalized, and did not get any post clinical care, for some hospital or rural clinic in my area, it's a usual phenomenon, and considered as "not a problem". Mostly its because they do not have enough human resources, high cost, and lack of undersanding about the importance of post-hospital care. The worst thing is when the patient do not have anyone in their family to take care of them after coming home from their treatment. Thanksfully, culture where neighboor should help other neighboor still exist here, so they won't be alone.

Just a few weeks ago, patient came to my pharmacy where I practice and told to me that she did not get any further post-clinical treatment from her hospital. She came with her neighboor because she lived alone (her husband already pass away, and do not have children). She takes plenty of ACE inhibitor agent and I don't believe she already consume it for more than a year to treat his headache (which in my lack experience and knowledge, it has nothing to do with that). When I asked her about her previous hospital where she got hospitalized (or at least got information about her previous medicine to prevent unnessecary medication), there were no further suggestion for her to take anymore medication. She initiate her-self to take medicine when things get ache in head. Low literation on medication sometimes made a willing-to-help neighboor do not know how to help her.

At that time, I just wandered how to overcome lack of human resources that have-willingness-but-lack-of-health-literature to help patient like her. Maybe if every post-hospitalized patient could get their medication record, it would be easier to give them medication more appropriately. Plus, someone or voluntered team that take care of them, hopefully, could reduce their medication cost, and prevent them to get mislead on next minor ailment treatment.

Well, all, I truly enjoy all of the shared information of this PHR discussion!

Looking forward

Regards,

Yudha

A/Prof. Terry HANNAN Moderator Replied at 12:29 AM, 6 Apr 2016

Yudha, thanks for this. To emphasise your points on having the patient "informed" all my patients receive a longitudinal summary record. It may be printed if the have no e-device or and emailed copy. With the latter the patient's can communicate with me directly and I respond and all these e-communications are stored in the record and there is only one copy -evolutionary- as their medical journey proceeds. If you send me your email I will send you some de-identified samples and my Template.

Esther Stephen Lubambi Replied at 8:50 AM, 7 Apr 2016

Hi Naomi,
I am new here, I would wish to understand how PHR was implemented in areas
thar are not resource constrained ,I am planing to do my thesis on topic
related to this.

A/Prof. Terry HANNAN Moderator Replied at 6:08 PM, 7 Apr 2016

Esther, "not resource constrained" or 'resource constrained". The knowledge resources are very different. On GHDonline we often discuss the latter so if you clarify this point I may be able to give you some directions. Terry

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