Having worked in public health informatics for many years. I have often grappled with the problem of collecting timely information needed to make decisions about current health problems.
The current and coming flu epidemic is a 'perfect storm' in this respect. We have some information about the flu but there is much we don't know. We don't know why some people have mild illness while others severe illness. We don't know how to treat the flu beyond the fact that some antivirals seem to be effective if taken early in the illness. There are many more potential treatments, both supportive and curative, that may be effective but we don't have good information. There is also the problem that flu viruses tend to mutate frequently and the illness can quickly change character. The public health community desperately needs real time information on the flu and there is no good source of this data. There are also several potentially valuable treatments that can be used beyond antivirals but we don't have information about how well these work. Better case reporting information can help sort out useful treatments.
Normal flu reporting takes place through various organizational mechanisms such as the US CDC, state and local health departments, and research projects. Internationaly, the WHO collects some information and various government and research organizations collect case reports. This information is of widely varying quality and completeness and the timeliness tends to be slow.
I have started a project to 'crowd-source' the collection of flu case reports. This will allow individuals to report flu cases. This has the potential to provide a valuable record of flu cases and to provide information that can be useful for guiding treatment and severity as well as looking for changes in the virus.
There are many potential problems with this crowd-source approach and I will be the first to admit that it may not yield useful information. Some of the problems can be addressed by good system design and I will attempt to incorporate the best of my knowledge into the initial data collection design. However, in true crowd-sourcing, I expect that the best design will evolve through suggestions from many of the very smart people out there.
You have probably noticed that I am using the singular in this reference. That is because at this time I am the only person involved in this project. I hope to attract others to the project in time. I should also note that although I am employed by a large public health organization which must remain nameless, this project is not officially sanctioned by that organization. I doubt that any large public health organization could undertake this type of project due to the many uncertainties and the unusual mode of data collection and analysis.
This project will operate with a few basic underlying principles:
- privacy and security
- open access to anonymous data
First, privacy and security.
The first principle is that individual patient information and information on the submitters of data will be kept private and secure. This is an absolute requirement. The data will be hosted in the US which has very strict health data privacy and security regulations and we have an obligation even beyond these to ensure that no personally identifiable information is released.
Second, open access to anonymous raw data
Besides crowd-sourcing the collection of data, I also plan to crowd-source the analysis of the data. This will hopefully attract bright minds to this task. We will not have any restrictions on access to the anonymous raw data. This also is very unconventional in the research world. Most researchers guard their raw data jealously and only rarely release data. It is almost unheard of to release raw data. I think this will improve the quality of analysis. Most researchers spend a lot of time cleaning and adjusting their data to 'improve' it. Unfortunately, this process often has the unintended consequence of distorting data and hiding or obscuring findings. (I adopted this policy after listening to this persuasive lecture by Tim Berners-Lee).
As should be clear from this post, this project has just started and now only consists of a web site place-holder www.reportmyflu.org which I hope to update soon with more information and data collection software. In true crowd-sourcing style, I hope to attract help in this task. Please comment on this post.
Sunday, August 16, 2009
Thursday, June 25, 2009
I don't want a choice, I want health care!
The US is currently having a debate about improving our pathetically incompetent health care 'system'.
The insurance companies who make billions of dollars of profit and don't do a very good job of actually paying for health care (over half of the personal bankruptcies in the US are related to health problems and 75% of these people actually have health insurance) have enlisted (or bribed) politicians to defend their profits under the campaign banner of 'choice'. They imply that a rich selection of insurance plans is a good thing and that a government plan will only offer one choice.
Cynically, when I am healthy I would like to have the choice to not spend any money on health insurance but when I am sick I would like to have the choice to have an insurance plan that offers 'full coverage' for everything that I think I might want to have done whether it was effective or not.
Practically, there should only be one choice that anyone would want for health insurance. This insurance should provide preventive services to keep me healthy and provide care services when I get sick. It's like those cell phone TV commercials when they parodied other companies that made you guess how many minutes you were going to use by asking young kids to make these decisions. Choose too many minutes and you pay too much. Choose too few minutes and you pay too much. The cell company wins both ways and you lose whatever you choose.
I don't want a choice. I want health insurance! Everyone wants health insurance.
This means that the best 'plan' is a single payer (this pools all risks) who is motivated to keep you healthy (not make profits). Sounds like Medicare for the rest of us. This should not be tied to employment so we should not have business provide health insurance. We should have a payroll tax (or other broad, progressive tax) to pay for it.
Unfortunately, doctors, pharma, hospitals, and medical device makers all make more money when they can sell you their products and services and their profit blinds them to ignore the fact that sometimes what they are selling is not safe or effective. We need a government agency deciding which treatments are safe, effective, and necessary.
The insurance companies who make billions of dollars of profit and don't do a very good job of actually paying for health care (over half of the personal bankruptcies in the US are related to health problems and 75% of these people actually have health insurance) have enlisted (or bribed) politicians to defend their profits under the campaign banner of 'choice'. They imply that a rich selection of insurance plans is a good thing and that a government plan will only offer one choice.
Cynically, when I am healthy I would like to have the choice to not spend any money on health insurance but when I am sick I would like to have the choice to have an insurance plan that offers 'full coverage' for everything that I think I might want to have done whether it was effective or not.
Practically, there should only be one choice that anyone would want for health insurance. This insurance should provide preventive services to keep me healthy and provide care services when I get sick. It's like those cell phone TV commercials when they parodied other companies that made you guess how many minutes you were going to use by asking young kids to make these decisions. Choose too many minutes and you pay too much. Choose too few minutes and you pay too much. The cell company wins both ways and you lose whatever you choose.
I don't want a choice. I want health insurance! Everyone wants health insurance.
This means that the best 'plan' is a single payer (this pools all risks) who is motivated to keep you healthy (not make profits). Sounds like Medicare for the rest of us. This should not be tied to employment so we should not have business provide health insurance. We should have a payroll tax (or other broad, progressive tax) to pay for it.
Unfortunately, doctors, pharma, hospitals, and medical device makers all make more money when they can sell you their products and services and their profit blinds them to ignore the fact that sometimes what they are selling is not safe or effective. We need a government agency deciding which treatments are safe, effective, and necessary.
Thursday, June 4, 2009
A Health IT Application Store?
You don't need a 'platform'. An interoperability specification is the platform and it needs to be open to ensure wide adoption and innovation. EHRs now are closed systems with limited data import and export over largely proprietary and/or obscure protocols. This keeps the customer captive but stifles the kind of innovation you are trying to foster.
In order for this to work, you will need to have open interoperability specifications. You need to have a way that an eRx application can talk to the patient index to get patient demographic information and also talk to the EHR to get allergy and current drug information.
Each of these modules needs to be able to generate and respond to messages to send and receive the information it needs. This should all be done through open interoperability specifications.
If you do this, anyone can create a new application that can find the information it needs and adds value.
You can give grants and prizes but I think these should be given for the open interoperability specifications and implementations. Once these are in place, the new applications will arrive.
In order for this to work, you will need to have open interoperability specifications. You need to have a way that an eRx application can talk to the patient index to get patient demographic information and also talk to the EHR to get allergy and current drug information.
Each of these modules needs to be able to generate and respond to messages to send and receive the information it needs. This should all be done through open interoperability specifications.
If you do this, anyone can create a new application that can find the information it needs and adds value.
You can give grants and prizes but I think these should be given for the open interoperability specifications and implementations. Once these are in place, the new applications will arrive.
Tuesday, May 26, 2009
Interoperability and Best of Breed
There is always a vigorous debate on the strengths and weaknesses of the monolithic integrated approach versus the 'best of breed' interoperable approach.
Health care software is a very diverse and complex field and it is just not possible for any vendor to have high quality offerings in all possible areas. When you consider that medical practices potentially need software that does billing, patient records, disease registry, electronic prescribing, best practice alerts, point of care decisions, laboratory and radiology ordering and reporting, and other functions I think that one can see that the skills involved in developing these functions are unlikely to be strong in all areas.
In addition, as the Nutting report points out, implementation and change is difficult and it is better to take a path of gradual modular implementation rather than try to digest a large application all at once.
Interoperability is difficult because most of our software is not designed for it. The standards exist in HL7, ICD, SNOMED, LOINC, etc but they are not well supported by the integrated software that is currently available.
If you look at the case of the internet standards HTTP, FTP, SMTP, IP, etc. you can see that interoperability works well when you have software that supports the standards. The Internet, web browsing, email, etc all works well using software from thousands of vendors running of a wide variety of platforms.
Unfortunately, medical software has been developed on a closed proprietary, monolithic model with poor support for standards. If physicians understand and demand interoperability, it will appear and vendors who support interoperable systems will prosper.
Unfortunately, the CCHIT seems to be perpetuating the monolithic integrated model of software. Hopefully it can be persuaded to open up to focus on interoperability.
Health care software is a very diverse and complex field and it is just not possible for any vendor to have high quality offerings in all possible areas. When you consider that medical practices potentially need software that does billing, patient records, disease registry, electronic prescribing, best practice alerts, point of care decisions, laboratory and radiology ordering and reporting, and other functions I think that one can see that the skills involved in developing these functions are unlikely to be strong in all areas.
In addition, as the Nutting report points out, implementation and change is difficult and it is better to take a path of gradual modular implementation rather than try to digest a large application all at once.
Interoperability is difficult because most of our software is not designed for it. The standards exist in HL7, ICD, SNOMED, LOINC, etc but they are not well supported by the integrated software that is currently available.
If you look at the case of the internet standards HTTP, FTP, SMTP, IP, etc. you can see that interoperability works well when you have software that supports the standards. The Internet, web browsing, email, etc all works well using software from thousands of vendors running of a wide variety of platforms.
Unfortunately, medical software has been developed on a closed proprietary, monolithic model with poor support for standards. If physicians understand and demand interoperability, it will appear and vendors who support interoperable systems will prosper.
Unfortunately, the CCHIT seems to be perpetuating the monolithic integrated model of software. Hopefully it can be persuaded to open up to focus on interoperability.
Thursday, April 23, 2009
Global Alert and Response in the 21st century
On Tuesday 21 April 2009 the CDC confirmed two cases of swine flu in California. I read about it on my BlackBerry while sitting in a meeting at WHO in Geneva the next day. This meeting was convened by the WHO to try to figure out how information and communication technology (ICT) could improve WHOs response to health emergencies.
Google flu trends has been shown to be remarkably accurate in reporting the location and time of flu infections. It looks at people searching Google for “flu”, “cough”, “headache”, “runny nose”, etc. It gives near real time results.
My daughter who lives in California is traveling in Italy. A friend of hers in California shares a new song with Laura who receives it on her iPhone.
Most people understand that the Internet sends more information faster. Most people don't understand the ramifications of the global peer to peer connectivity provided by the Internet.
The International Health Regulations (IHR) are perfectly designed for the world 50 years ago. They impose a strong filter at the source (an elaborate flow chart to decide when WHO should be notified of an event) and a “chain of command” of reporting to the country office, regional office, then headquarters. The information is then analyzed and WHO decides what information will be made public.
This has several problems:
Filters
When communication was limited by low bandwidth and slow speeds, it made sense to impose strong filters at the source to avoid overwhelming the system. In the age of the Internet, this only serves to filter out most of the potentially valuable information.
Control
The WHO assumes that it can control information. In the age of the Internet, nobody can control information and if you try to control information you become irrelevant.
Peer to peer
The Internet is not just more and faster information. It means that everyone is always connected to everyone else. The IHR hierarchical model which uses a chain of command, control of information, and a limited pool of experts only serves to make it irrelevant. The rest of the world will know about the event via Google, Twitter, and YouTube long before WHO makes its pronouncement through the press.
To make the IHR relevant and useful WHO needs to:
Open up communication. You can't and shouldn't control information.
Remove the filters. You can and should receive more information sources.
Use peer to peer. Our connected world offers a rich collaborative workspace... use it.
Google flu trends has been shown to be remarkably accurate in reporting the location and time of flu infections. It looks at people searching Google for “flu”, “cough”, “headache”, “runny nose”, etc. It gives near real time results.
My daughter who lives in California is traveling in Italy. A friend of hers in California shares a new song with Laura who receives it on her iPhone.
Most people understand that the Internet sends more information faster. Most people don't understand the ramifications of the global peer to peer connectivity provided by the Internet.
The International Health Regulations (IHR) are perfectly designed for the world 50 years ago. They impose a strong filter at the source (an elaborate flow chart to decide when WHO should be notified of an event) and a “chain of command” of reporting to the country office, regional office, then headquarters. The information is then analyzed and WHO decides what information will be made public.
This has several problems:
Filters
When communication was limited by low bandwidth and slow speeds, it made sense to impose strong filters at the source to avoid overwhelming the system. In the age of the Internet, this only serves to filter out most of the potentially valuable information.
Control
The WHO assumes that it can control information. In the age of the Internet, nobody can control information and if you try to control information you become irrelevant.
Peer to peer
The Internet is not just more and faster information. It means that everyone is always connected to everyone else. The IHR hierarchical model which uses a chain of command, control of information, and a limited pool of experts only serves to make it irrelevant. The rest of the world will know about the event via Google, Twitter, and YouTube long before WHO makes its pronouncement through the press.
To make the IHR relevant and useful WHO needs to:
Open up communication. You can't and shouldn't control information.
Remove the filters. You can and should receive more information sources.
Use peer to peer. Our connected world offers a rich collaborative workspace... use it.
Tuesday, February 17, 2009
Is it a good idea to have a universal patient identifier?
The universal patient identifier is a single number that can uniquely identify individual patients. It is usually defined at the national level.
With the advent of electronic medical records that offer the potential of lifetime longitudinal medical and health records, there has been renewed interest in the subject of a universal patient identifier (UID).
As with most things, there are advantages and disadvantages to the UID.
For electronic information systems, the UID offers the promise of a method to link information from many sites (clinics, labs, care and support services) and information that is generated over the patient's lifetime together into a single record (real or virtual) that gives a comprehensive picture of the patient's health history. This comprehensive view can improve the quality of care and avoid unnecessary tests and treatments.
The UID also offers the potential for improved insight into disease diagnosis and treatment. Aggregate information from many patients can show disease patterns and potentially highlight best practices in health care. This information can track population health and provide valuable information for health policy and planning.
However, the UID is not without problems. First is the basic problem of issuing UIDs to ensure that each patient has one and only one UID and that no two patients have the same UID. Patients who present themselves for health services should possess a method of identification. Ideally this will be a UID card and possibly some biometric (fingerprint, iris, etc.) identification. A patient may have lost their card or the biometric information may not be useful. In this case they need to identify themselves using demographic and other information so that the clinic can find their UID in a 'Master Patient Index'. This can be problematic because of similar information or uncertainty of information. Patients may also want to avoid identification for any number of reasons including stigma or financial gain. The result of these problems is that patients may be mis-identified leading to duplicate UIDs for the same patient (when a new UID is issued) or a cross linking of patients where two or more patients are using the same UID. Both of these situations are very bad for the integrity of the data and and extremely difficult to fix.
Perhaps a better solution is to assign each patient a GUID (globally unique number) at each facility along with ancillary identifying information (the usual demographic information plus any other ID numbers that the patient may have. All of this can be submitted to a 'Master Patient Index' which can do the heavy lifting work of sorting out unique patients. Meanwhile, each facility will have a unique record for each of their patients that are uncontaminated by two different patient having the same number. If a patient ends up with several GUID numbers at a facility (and they will have different GUIDs at other facilities), these can all be combined in the MPI.
With the advent of electronic medical records that offer the potential of lifetime longitudinal medical and health records, there has been renewed interest in the subject of a universal patient identifier (UID).
As with most things, there are advantages and disadvantages to the UID.
For electronic information systems, the UID offers the promise of a method to link information from many sites (clinics, labs, care and support services) and information that is generated over the patient's lifetime together into a single record (real or virtual) that gives a comprehensive picture of the patient's health history. This comprehensive view can improve the quality of care and avoid unnecessary tests and treatments.
The UID also offers the potential for improved insight into disease diagnosis and treatment. Aggregate information from many patients can show disease patterns and potentially highlight best practices in health care. This information can track population health and provide valuable information for health policy and planning.
However, the UID is not without problems. First is the basic problem of issuing UIDs to ensure that each patient has one and only one UID and that no two patients have the same UID. Patients who present themselves for health services should possess a method of identification. Ideally this will be a UID card and possibly some biometric (fingerprint, iris, etc.) identification. A patient may have lost their card or the biometric information may not be useful. In this case they need to identify themselves using demographic and other information so that the clinic can find their UID in a 'Master Patient Index'. This can be problematic because of similar information or uncertainty of information. Patients may also want to avoid identification for any number of reasons including stigma or financial gain. The result of these problems is that patients may be mis-identified leading to duplicate UIDs for the same patient (when a new UID is issued) or a cross linking of patients where two or more patients are using the same UID. Both of these situations are very bad for the integrity of the data and and extremely difficult to fix.
Perhaps a better solution is to assign each patient a GUID (globally unique number) at each facility along with ancillary identifying information (the usual demographic information plus any other ID numbers that the patient may have. All of this can be submitted to a 'Master Patient Index' which can do the heavy lifting work of sorting out unique patients. Meanwhile, each facility will have a unique record for each of their patients that are uncontaminated by two different patient having the same number. If a patient ends up with several GUID numbers at a facility (and they will have different GUIDs at other facilities), these can all be combined in the MPI.
Tuesday, January 20, 2009
Health Care is a Right vs. 'Personal Responsibility'
Health care is a right as stated in the UN Declaration of Human Rights and confirmed by most other civilized nations.
It seems that people are afraid of the consequences of declaring health a human right but are blind to the bankruptcy of our current 'personal responsibility' health care system. They feel that creating an entitlement to health care will lead to out of control health spending.
Well, we have out of control health spending now that is driven by profit, not health. We should give health a chance and take away the excessive profits.
The US as a whole spends more than twice any other country on 'personal responsibility' health care but suffers the worst health of all industrialized advanced countries (and even a few poorer countries such as Cuba).
Our profit oriented personal responsibility health care system is bankrupting the country. Individually, each of us is only one serious illness away from personal bankruptcy. (Actually, those in our 'socialized' Medicare system are protected from this bad outcome.)
We are all entitled to a better health care system. One that is oriented to providing basic human rights rather than ensuring profits for pharma, insurance, hospitals, etc.
The events of the last eight years have proven that unregulated capitalism does not work. We need to face up the fact that the government must provide services and regulation where the private sector has been an abysmal failure. This means regulated universal health care as a right... and yes, it may mean that you may make less profit in health care. This is a good thing for all of us. You will not starve and I will not mourn the excessive profits of the health care industry.
It seems that people are afraid of the consequences of declaring health a human right but are blind to the bankruptcy of our current 'personal responsibility' health care system. They feel that creating an entitlement to health care will lead to out of control health spending.
Well, we have out of control health spending now that is driven by profit, not health. We should give health a chance and take away the excessive profits.
The US as a whole spends more than twice any other country on 'personal responsibility' health care but suffers the worst health of all industrialized advanced countries (and even a few poorer countries such as Cuba).
Our profit oriented personal responsibility health care system is bankrupting the country. Individually, each of us is only one serious illness away from personal bankruptcy. (Actually, those in our 'socialized' Medicare system are protected from this bad outcome.)
We are all entitled to a better health care system. One that is oriented to providing basic human rights rather than ensuring profits for pharma, insurance, hospitals, etc.
The events of the last eight years have proven that unregulated capitalism does not work. We need to face up the fact that the government must provide services and regulation where the private sector has been an abysmal failure. This means regulated universal health care as a right... and yes, it may mean that you may make less profit in health care. This is a good thing for all of us. You will not starve and I will not mourn the excessive profits of the health care industry.
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