[olsen]

http://www.gooznews.com/archives/001129.html
July 29, 2008
. . . If I Only Had a Brain
Hip replacement devices go bad. Europeans and Australians know it long before Americans. Why? They have a electronic registry that tracks performance, according to today's New York Times.

But why limit this story to joint replacements? Why not all medical devices. Hey, while we're on the subject, why not adverse events from drugs? Or all off-label uses of drugs so we can track their performance? Heck, why don't we track performance of on-label uses to see if there is huge discrepancies between the results of the small clinical trials that led to Food and Drug Administration approval and the product's widespread use in the general population?

Isn't this really a story about electronic medical records and public reporting, and how America, despite spending nearly twice as much on average as other advanced industrial nations on health care, lags behind on these measures of performance, just as it does on life expectancy, infant mortality, and unnecessary medical errors? As a Commonwealth Fund Report Card pointed out last week:

The U.S. now ranks last out of 19 countries on a measure of mortality amenable to medical care, falling from 15th as other countries raised the bar on performance. Up to 101,000 fewer people would die prematurely if the U.S. could achieve leading, benchmark country rates.
But not everything on the report card was grim:

The exception to this overall trend occurred for quality metrics that have been the focus of national campaigns or public reporting. For example, a key patient safety measure—hospital standardized mortality ratios (HSMRs)—improved by 19 percent from 2000–2002 to 2004–2006. This sustained improvement followed widespread availability of risk-adjusted measures coupled with several high-profile local and national programs to improve hospital safety and reduce mortality. Hospitals are showing measurable improvement on basic treatment guidelines for which data are collected and reported nationally on federal Web sites. Rates of control of two common chronic conditions, diabetes and high blood pressure, have also improved significantly. These measures are publicly reported by health plans, and physician groups are increasingly rewarded for results in improving treatment of these conditions.
In other words, keeping close track of data, publishing the results, and rewarding physicians for improved performance works.

Posted by gooznews at July 29, 2008 01:12 PM

[paula_w]

If patients are just getting around to looking at electronic records, you can bet the medical community echelon [sp?] has already dipped its fingers into the pie for money.

Perry Cohen has been trying to get orgs interested in electronic projects. But people are skittish. If we host a database right here on neuro talk, the possibilities for assessing patient needs, survey patient opinions about issues, the list is endless for collecting patient resources and willingness to take action.

Again, let's just do it ourselves.

paula

Originally Posted by olsen

http://www.gooznews.com/archives/001129.html
July 29, 2008
. . . If I Only Had a Brain
Hip replacement devices go bad. Europeans and Australians know it long before Americans. Why? They have a electronic registry that tracks performance, according to today's New York Times.

But why limit this story to joint replacements? Why not all medical devices. Hey, while we're on the subject, why not adverse events from drugs? Or all off-label uses of drugs so we can track their performance? Heck, why don't we track performance of on-label uses to see if there is huge discrepancies between the results of the small clinical trials that led to Food and Drug Administration approval and the product's widespread use in the general population?

Isn't this really a story about electronic medical records and public reporting, and how America, despite spending nearly twice as much on average as other advanced industrial nations on health care, lags behind on these measures of performance, just as it does on life expectancy, infant mortality, and unnecessary medical errors? As a Commonwealth Fund Report Card pointed out last week:

The U.S. now ranks last out of 19 countries on a measure of mortality amenable to medical care, falling from 15th as other countries raised the bar on performance. Up to 101,000 fewer people would die prematurely if the U.S. could achieve leading, benchmark country rates.
But not everything on the report card was grim:

The exception to this overall trend occurred for quality metrics that have been the focus of national campaigns or public reporting. For example, a key patient safety measure—hospital standardized mortality ratios (HSMRs)—improved by 19 percent from 2000–2002 to 2004–2006. This sustained improvement followed widespread availability of risk-adjusted measures coupled with several high-profile local and national programs to improve hospital safety and reduce mortality. Hospitals are showing measurable improvement on basic treatment guidelines for which data are collected and reported nationally on federal Web sites. Rates of control of two common chronic conditions, diabetes and high blood pressure, have also improved significantly. These measures are publicly reported by health plans, and physician groups are increasingly rewarded for results in improving treatment of these conditions.
In other words, keeping close track of data, publishing the results, and rewarding physicians for improved performance works.

Posted by gooznews at July 29, 2008 01:12 PM

[olsen]

Again, let's just do it ourselves.

paula[/QUOTE]


I have been in favor of compiling a data base/registry of PD patients (either nationally or internationally) since my husband was diagnosed in 2004--did not think about the need prior to that time. Why is it each physician's precribing habits are compiled and readily available for the pharm cos to review, but developing and maintaining a national registry for patients with PD cannot be done without Congress passing a Bill? And why am I not privy to that prescribing information?
I am so in favor of a patient controlled registry/data base and would contribute in any way I am able.

[shcg]

Privacy and anonymity are two personal possessions on the brink of extinction. Americans (USA) are the last to have and the last to recognize the end of freedom and the impending horror of Martial Law and Slavery. PD puts us at the end of a very short rope. We have no where to run and no where to hide when we needs more drugs. Sorry to present a look at the other side, but look at the suppression of hope and suppression of doctors who would practice a new treatment that might work!

A database would be incredibly helpful as no one knows squat about PD besides us; pwp. Look at the endless posts regarding Big Pharma, established medicine, non profits, etc. being totally oblivious to our needs, lost in the pursuit of money, sold out to the status quo, worse than worthless to us. The few inspirational exceptions and pwp spend more time every 24 hours searching for and researching for any shred of insight into healing or possible escape from PD than the rest of humanity combined in a year. We are on duty 24/7 processing the data our bodies feed us like it or not. We are Self Aware in an endless sea of time. Little escapes us.

The obvious lack of progress and definable results in our search treatments to improve quality of life or a cure is for obvious reasons. We have difficulty communicating, thinking and organizing (e.g. this post!) and we don't keep logs or record the almost unlimited wealth of data we have pass before us as individuals that would reveal repeatable patterns of cause and effect. Without the readily available ability or means to quantify, qualify and record our lives into a database type record, we will never see the patterns of our reactions to the thousands of little events that we can control or repeat and fashion into tools to use to our benefit. Nor, will we be able to, with tremendous synergy and greatly increased probability of significance, find patterns and similarities with other pwp. The probability of discovering, uncovering or recognizing the means to effective control of, or remission of, if not a complete cure for PD in the time it takes to design, introduce, and accumulate a years worth data is directly if not exponencially proportional to the increased quantity, quality and accessibility of data. Ten or Twenty years to find a cure becomes "in time for Christmas" with 10 to 20 times the quality and 10 to 20 times or a perhaps 1000 times the quantity of accessible data "by the people, for the people."

This forum is the best source of individually verified and trusted data we have and is an incredibly useful and lifesaving resource for support and hope. Still, the "White Rats controlled experiments" and some group surveys are the best attempt to correlate our personal data we have seen. We are a tiny handful of the pwp and possess a tiny bit of statistical data that we often have a hard time correlating from person to person in our little group. Still, by virtue of the internet and our own fertile imaginations we have created and are aware of almost unlimited ideas and possibilities to be investigated and understood. The power of a well designed database to accurately gather the statistical data that we determine is needed to assess the validity, effectiveness, relevance, usefulness, significance, performance, etc., of the thousands of drugs, foods, supplements, therapies, exposures, experiences, beliefs, and even dreams pwp individually verify.

My idea of an ideal database would be proprietary database software on my computer or hand held portable that would allow accurate and painless recording of data into standardized fields that would be customized for each and any area of interest. It would by design simplify the organization of data and promote accuracy. Interactive reminders for time tracking and completion of data entry in all fields rewarded. The format for each area of interest would be available online as a specific form with standardized fields. The resulting data for each form could be analyzed individually and/or be incorporated into an online database. Once upon a time, before PD, I created an extensive set of templates for use in operating a plant nursery and an extremely useful plant database using FileMakerPro software. Data entry was easy and fast with little if any training.

The question of "where and with whom does the Info reside" with regards to a desire for the existence of the illusion of privacy and anonymity is probably more a question of individual rights to access the data. My assumption is that at present and definitely in the near future, individual rights and freedoms will be "illegal" and conformity will preside. If the results of a database lead to a better treatment and a cure to PD, it will quite possibly be within "alternative" medicine and of no interest to "Big Business." I guess if a cure is to be found through the organizing of individual experience into a common database, we had better get on with it while individual opinion, freedom, and rights are still tolerated. The database creation, maintenance, access and use would have to be by individuals and for individuals.

The ability of a well defined and well designed database to accurately organize, gather, and process data from a large group of people is a statistically powerful tool. The ability to determine the data to be gathered and how it is processed is a politically and economically powerful tool.

[Perryc]

Olsen, Shcg:

I share your interest in creating the PWP version of Personal Health Records and applications to patient registries and other uses. Shcg, you obviously recognize the value and have a handle on the key issues. As Paula mentioned, I have worked with the Cisco Learning Institute for a number of years on the issue of EMR (electronic medical records) which is the other half of the equation. I also have been active in workshops at the Institute of Medicine, Round table on EBM (evidence based medicine) that shares my vision for empowerment of PWP through information technology, such as the patient registry you have mentioned, and develops strategies for implementation of these tools in a system for continuous quality improvement, called a learning healthcare system. (http://www.iom.edu/CMS/28312/RT-EBM/41894.aspx)

To accomplish this task, I need motivated and knowledgeable Patients as collaborators to help the design of patient centered criteria..I also need web savy technologists to incorporate the power of social networking into the mix. I would like to build the capacities in such a way that they provide maximum value to all PWP. I have been seeking grant funding to support some of this effort and I am waiting for a decision from a Foundation.

I would like to be in direct contact with anyone who is interested in participating in a PWP data base project. (write to pdc202@gmail.com.)

Perry

[indigogo]

Olsen said:

"I have been in favor of compiling a data base/registry of PD patients (either nationally or internationally) since my husband was diagnosed in 2004--did not think about the need prior to that time. Why is it each physician's precribing habits are compiled and readily available for the pharm cos to review, but developing and maintaining a national registry for patients with PD cannot be done without Congress passing a Bill? And why am I not privy to that prescribing information?
I am so in favor of a patient controlled registry/data base and would contribute in any way I am able."

Isn't the reason that registries have to be legislated is so that they are mandated to be mandatory so that the data is statistically reliable for scientific purposes? I thought voluntary contribution to a registry negated the data reliability.

Regardless, the need for this is important. It is also a much different and more complicated project than the one being discussed on the other thread that is advocacy oriented. Just want to make sure there is a distinction. At some point there might be a way to merge the two, but the legal and scientific difficulties present in developing a scientific database should not hold up the establishment of one for advocacy.

[olsen]

carey, you are correct. the possibility of a completely patient run registry would not work. and due to HIPPA , a law must be passed by congress to allow a registry to be maintained. there is a need to petition congress to pass such a law. the ALS community has done just that. I think they are awaiting voting on their law at present. the push started with the ALScommunity. though the patients obviously cannot participate in maintaining it, they were instrumental in putting it in front of the legislators and lobbying for its passage. that is what I meant in my post, but did not express well....there will be no registry unless a law is passed creating one.with physician compliance, the real #'s of PD prevalence will be available. as well as PD incidence. anyone with an "in" with one of our legislators?

[paula_w]

I didn't know that. Thanks for that...I think I was confused about the options about the database under discussion. I knew it wasn't the same as a registry, but now can see it is limited by law.

Learn something new every day.

paula

[Perryc]

Originally Posted by indigogo

Isn't the reason that registries have to be legislated is so that they are mandated to be mandatory so that the data is statistically reliable for scientific purposes? I thought voluntary contribution to a registry negated the data reliability.

Regardless, the need for this is important. It is also a much different and more complicated project than the one being discussed on the other thread that is advocacy oriented. Just want to make sure there is a distinction. At some point there might be a way to merge the two, but the legal and scientific difficulties present in developing a scientific database should not hold up the establishment of one for advocacy.

I agree with your assessment Carey. The data base discussed in this thread is entirely different than the on the other thread. The two could be married much later down the road, but for now they are entirely separate. I had suggested in the other thread that the PWP medical record could be built on the advocacy list, but that may not be the best way to go. It would probably be better to build patient registry data on data elements in EMR's (electronic medical records and PHR's (personal health records)

The PD community unity for PWP discussion in the "whats wrong" thread has picked up a simple but important task suggested by TommyI. A worldwide advocacy data base of PWP activists and can be a powerful tool for mass communication with these key patients. While it is no small task to keep the list up to date, it is something that could be accomplished with the web resources and skills that we already have. The objective is to establish participation criteria in this database that are no more than a low barrier to sign up. The strategy would be to building on the names list from existing mailing lists and web site links to spread the word quickly and maximize the number of people who sign up. Although I would like to add more data elements, it would detract from the goal of getting all PWP activists (large numbers) on board fast. Additional data may be requested once the members of this stabilize. Tom's idea to call it PD hope is a good title for the reasons given. If that activity can unify all the many talents of those who have been promoting it, and set up governing procedures to gain everyone's confidence, I am all in favor of it and will contribute as much as possible to the unified success

What is being discussed here is a patient motivated data base which indeed requires more organization and discussion to come up with a plan that works. At this point I would like to find out about others who are interested in working on the creation of such tools.

Perry

[jeanb]

Originally Posted by olsen

I have been in favor of compiling a data base/registry of PD patients (either nationally or internationally) since my husband was diagnosed in 2004--did not think about the need prior to that time. Why is it each physician's precribing habits are compiled and readily available for the pharm cos to review, but developing and maintaining a national registry for patients with PD cannot be done without Congress passing a Bill? And why am I not privy to that prescribing information?
I am so in favor of a patient controlled registry/data base and would contribute in any way I am able.

Madelyn
the Ali Center has a patient registry. I know they struggle to get pwp to sign up.

"Parkinson's Registry

Don’t be silent – please consider entering your story in the MAPC Parkinson’s Registry.

MAPC needs you to participate in developing the world’s largest database of information about the ways that people with Parkinson’s are managing their care and treatment of PD.

Data collected from the registry will be used to facilitate the development of new therapies and healthcare services. Our goal is to improve the quality of life for people with Parkinson’s at MAPC and at PD centers worldwide.

The registry will also enable participants to learn about new research studies for which they may qualify."

www.maprc.com

I"m in it. They contact me periodically to update my info.