People will ask you to sign up. Starting soon, perhaps when you show up in a doctor’s office or attend a health fair, someone may be asking you whether you want your medical records to become part of the Health Information Exchange.

It’s up to you, and an awful lot hangs on your decision.

The exchange is an electronic network, still in development, that eventually will connect different kinds of health-care providers in Rhode Island –– such as laboratories, doctors, pharmacies and hospitals –– so that when you go for care, the computer will yield a complete medical record showing your test results and interactions with health-care providers.

Proponents say these interconnected medical records will make health care better, safer and less expensive. For example, if you’re in the emergency room, doctors there will be able to find out whether you have any drug allergies or underlying conditions. If you have many health problems, your primary-care doctor will be kept instantly apprised of your specialists’ findings, and can track whether you’re getting drugs that shouldn’t be taken together. In theory, the result should be fewer repeated tests and fewer errors.

Provided that you agree to sign up. The whole multimillion-dollar endeavor hinges on you, the patient. The program is voluntary, and it can’t move forward if individuals don’t enroll.

“I really believe lives are at stake,” said Laura Adams, president and chief executive officer of the Rhode Island Quality Institute, the private agency designated by the state to run the information exchange. The exchange will start in March with just a few participating laboratories, but Adams’ admittedly ambitious goal is to have the entire state connected within five years.

Yesterday, in a ceremony at the State House, Governor Carcieri signed the Rhode Island Health Information Exchange Act of 2008, which was written after the quality institute held dozens of meetings with consumers, providers, insurers, academics, employers and others. The law, unique to Rhode Island, establishes the rules governing the exchange; it gives patients control over who sees their records, puts the Health Department in charge, requires a commission to oversee the exchange, and sets civil and criminal penalties for violating the law.

“How many people use an ATM card?” Carcieri asked a room packed with people from many corners of the health-care industry. People readily entrust their financial information to interconnected banks; it’s time to link health-care providers in the same way, he said.

“We get this built,” Carcieri said, “we have the most efficient, the most effective health-care system in the country.”

Rhode Island is vaulting ahead of most other states in developing its health information exchange. So those who sign up will be either pioneers or guinea pigs, depending on how you look at it.

“There are many issues where it’s a very positive thing to lead,” said Steven Brown, executive director of the Rhode Island Affiliate of the American Civil Liberties Union. “There are other issues where it’s helpful to let others lead and learn form their mistakes. … I think we are going to find lots of problems that other states will learn from us about.”

The exchange is still in its infancy. When it launches in March, it will include only laboratory information from Lifespan, East Side Clinical, and the Department of Health laboratories, as well as medication history information from retail pharmacies. Gradually other groups will participate.

The quality institute has a $5-million federal grant to build the network, but will be seeking money from the state and from health insurers to bring it to fruition. Adams estimates it will cost $3 million to $4 million a year for five years to build it, and then about $1.5 million to $2 million a year to sustain it.

When you enroll, you can choose one of three levels of privacy: You can specify that your records go through the exchange only in an emergency. You can specify that only certain providers will have access to your records. Or you can say that anyone involved in your care can have access. You also can be notified every time someone looks at your medical records. You can change these designations, or withdraw from the system altogether, at any time.

“Our philosophy is, this information belongs to the patient,” Adams said.

By having patients designate who will have access to their records, the legislation provides stronger protections than the Privacy Rule of the Health Insurance Portability and Accountability Act. The penalties are also greater, Adams said –– a $10,000 fine for each violation.

But although the patient can control who sees the records, the patient cannot control what they contain. You cannot exclude test results for a sexually transmitted disease, or records of your psychiatric treatment, for example. This troubles Brown, of the ACLU. That means if you see a podiatrist to remove a callus, he or she gets to read all about your treatment for alcohol abuse.

Adams said that doctors would not buy into the program if patients could pick and choose what would appear in their record; doctors wanted assurance that medical records would be complete.

Brown also noted that nothing in the law prevents doctors from refusing to accept patients who decide not to enroll in the exchange, so the freedom of choice may prove “illusory.”

“This can help provide better treatment to individuals. There’s no question about that,” Brown said. “My guess is the overwhelming majority of people will welcome anything that will be said to provide a better and more coordinated system of care. In doing so we are giving up some very basic privacy rights.”

ffreyer@projo.com