Addendum on May 15, 2001. I have found that I was in error regarding CHIA and the all-payer claims database. Please see the comment by Commissioner Áron Boros on this post, which is reprinted in its entirety on a new post dated today. My apologies to him and his agency.
ePatient Dave has created a worldwide call for patient to have access to their own clinical data. His mantra is "Give me my damn data!" and there are calls to hear his rap whenever and wherever he travels. Here it is, for those of you out of the loop:
Dave's plea is to allow patients and doctors to engage in a partnership of patient care. He owes his life to his doctor, Danny Sands, and others who encouraged this.
Dave's call for action at the individual level has a societal analog. What better place than Massachusetts, which took the lead on universal coverage, to adopt it? But the state bureaucracy has not followed through.
In 2010, the Legislature and Governor Patrick enacted a bill, Chapter 288, that required the collection of an “all payer claims database” by the Division of Health Care Finance and Policy. As the name suggests, this database contains every health care transaction between insurers and providers in the state. The numbers and patterns in this database explain more about our existing health care delivery system than has ever been assembled in one place.
The existence of this database offers the potential for all parties to study the actual transactions taking place in the Massachusetts health care system. It permits testing of hypotheses with regard to payment models, clinical affiliations, and a variety of other pertinent matters with regard to the state's health care policy agenda. Because Massachusetts took the national lead with regard to health care reform, it also offers potential value to the country as a whole.
A previous DHCFP commissioner asserted that the dataset would “allow a broad understanding of health care spending and utilization across organizations, population demographics, and geography.” Both that commissioner and the next one failed to act: All that value remained trapped and hidden from view, burdened by unreasonable regulations regarding access.
I have to conclude that political forces from powerful interested parties, including those who benefit from the current payment system, kept the data under wraps.
The stewardship of the database is now in the hands of a newly formed state agency. This one is not part of the administration. It is independent. Here's the background from the Governor's website:
In August 2012, Governor Patrick signed landmark legislation that launches the next phase of health care reform. Implementing the reforms in the legislation, which takes effect Nov. 5, will result in nearly $200 billion in savings over the next 15 years by moving to alternative payments, increasing transparency, addressing market power, promoting wellness, enacting malpractice reform and supporting health information technology. Implementation will include a number of state agencies, along with cooperation from providers and insurers, non-profit organizations, and input from and information delivered to the public.
An important part of the bill was to establish the Center for Health Information and Analysis as the successor agency to the Division of Health Care Finance and Policy:
CHIA is an independent state agency that collects health care cost and quality information and provides objective analysis of this data to assist in the formulation of health care policy. CHIA maintains a number of the Division’s responsibilities, including the compiling of the state’s annual cost trends reports, managing the state health data repository, and monitoring the financial stability of hospitals and health plans.
Months ago, David Stephenson and I suggested:
Massachusetts universities and NGOs have the largest collection of health care researchers in the world. It is time to make this database open and free of charge to those researchers. Let them create hypotheses and test them — using real numbers. Allow insurance companies and hospital systems, too, to view treatment patterns and finances to evaluate new policies and models of clinical care. All this can be done safely and appropriately, because the law contains strict privacy safeguards.
The law, “to promote cost containment, transparency and efficiency in the provision of quality health insurance,” is a good one, but only if the data is really liberated. It must be automatically available to those who need it, when and where they need it, in forms they can use, and with freedom to use as they choose, while simultaneously protecting security and privacy.
Among the other states — Kansas, Maine, Maryland, Minnesota, New Hampshire, Oregon, Tennessee, Utah, and Vermont — that have created similar data bases, we know of none that have taken this approach to freeing the numbers to enable the information to be used for the greater good. Instead, most states have a governing board or advisory committee that administers or provides recommendations on the reports to be generated from the databases. That kind of government is a hold-over from the centralized control of another era, a form of government that inconsistent with a world of web 3.0.
It is within the authority and power of the Executive Director and the Board of CHIA to "give us our damn data!" It is time. Do they have the spine to stand up to those who wish to keep it hidden?
ePatient Dave has created a worldwide call for patient to have access to their own clinical data. His mantra is "Give me my damn data!" and there are calls to hear his rap whenever and wherever he travels. Here it is, for those of you out of the loop:
Dave's plea is to allow patients and doctors to engage in a partnership of patient care. He owes his life to his doctor, Danny Sands, and others who encouraged this.
Dave's call for action at the individual level has a societal analog. What better place than Massachusetts, which took the lead on universal coverage, to adopt it? But the state bureaucracy has not followed through.
In 2010, the Legislature and Governor Patrick enacted a bill, Chapter 288, that required the collection of an “all payer claims database” by the Division of Health Care Finance and Policy. As the name suggests, this database contains every health care transaction between insurers and providers in the state. The numbers and patterns in this database explain more about our existing health care delivery system than has ever been assembled in one place.
The existence of this database offers the potential for all parties to study the actual transactions taking place in the Massachusetts health care system. It permits testing of hypotheses with regard to payment models, clinical affiliations, and a variety of other pertinent matters with regard to the state's health care policy agenda. Because Massachusetts took the national lead with regard to health care reform, it also offers potential value to the country as a whole.
A previous DHCFP commissioner asserted that the dataset would “allow a broad understanding of health care spending and utilization across organizations, population demographics, and geography.” Both that commissioner and the next one failed to act: All that value remained trapped and hidden from view, burdened by unreasonable regulations regarding access.
I have to conclude that political forces from powerful interested parties, including those who benefit from the current payment system, kept the data under wraps.
The stewardship of the database is now in the hands of a newly formed state agency. This one is not part of the administration. It is independent. Here's the background from the Governor's website:
In August 2012, Governor Patrick signed landmark legislation that launches the next phase of health care reform. Implementing the reforms in the legislation, which takes effect Nov. 5, will result in nearly $200 billion in savings over the next 15 years by moving to alternative payments, increasing transparency, addressing market power, promoting wellness, enacting malpractice reform and supporting health information technology. Implementation will include a number of state agencies, along with cooperation from providers and insurers, non-profit organizations, and input from and information delivered to the public.
An important part of the bill was to establish the Center for Health Information and Analysis as the successor agency to the Division of Health Care Finance and Policy:
CHIA is an independent state agency that collects health care cost and quality information and provides objective analysis of this data to assist in the formulation of health care policy. CHIA maintains a number of the Division’s responsibilities, including the compiling of the state’s annual cost trends reports, managing the state health data repository, and monitoring the financial stability of hospitals and health plans.
Months ago, David Stephenson and I suggested:
Massachusetts universities and NGOs have the largest collection of health care researchers in the world. It is time to make this database open and free of charge to those researchers. Let them create hypotheses and test them — using real numbers. Allow insurance companies and hospital systems, too, to view treatment patterns and finances to evaluate new policies and models of clinical care. All this can be done safely and appropriately, because the law contains strict privacy safeguards.
The law, “to promote cost containment, transparency and efficiency in the provision of quality health insurance,” is a good one, but only if the data is really liberated. It must be automatically available to those who need it, when and where they need it, in forms they can use, and with freedom to use as they choose, while simultaneously protecting security and privacy.
Among the other states — Kansas, Maine, Maryland, Minnesota, New Hampshire, Oregon, Tennessee, Utah, and Vermont — that have created similar data bases, we know of none that have taken this approach to freeing the numbers to enable the information to be used for the greater good. Instead, most states have a governing board or advisory committee that administers or provides recommendations on the reports to be generated from the databases. That kind of government is a hold-over from the centralized control of another era, a form of government that inconsistent with a world of web 3.0.
It is within the authority and power of the Executive Director and the Board of CHIA to "give us our damn data!" It is time. Do they have the spine to stand up to those who wish to keep it hidden?