Personal Health Information

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HCT2_wp_lowenhaupt.pdf

Accenture

A personal health record opens up unprecedented opportunities for improved safety andbetter care and disease management. Its maintenance must be a collaborative effort betweenthe patient and the provider, a partnership that assures each patient the best results.

The Consequences of Being Ill-Informed

Maintaining a personal health record is a lot like managing a passbook savings account. In each case, the patient carries information about past transactions needed at the point of service. In either case, accurate and up-to-date information is essential. Imagine that a bank customer walks across town to a branch where the tellers don’t know him. He wants to withdraw some money from his savings account. When he gets there, he realizes that he forgot to bring his passbook. The teller asks the customer if he has sufficient funds in his account to cover the withdrawal. The customer responds that he’s pretty sure he has enough money in his account. The teller in this slightly far-fetched analogy can’t verify the customer’s balance without the passbook. “OK,” says the teller, “I can give you the money, but if it turns out that you’re wrong and overdraw your account, you will surely serve a lengthy prison term for bank fraud.” The prudent customer would make a hasty – and permanent — retreat from such an institution.

Yet, consumers are generally better informed of their bank balances and credit ratings than the state of their personal health information. Suppose our customer injures himself as he runs out of the bank branch. He shows up in a hospital emergency room. The ER physician, who knows nothing about the patient’s medical history or condition, asks him if he takes any medications. “Yes,” says the patient, “I take some blue pills for my blood pressure, and I think the red ones help my breathing.” “That helps a little,” says the physician. “I think I know what drugs you’re talking about. But, if my guesses are wrong and your medications aren’t what I think they are, the treatment we give you might injure or kill you.”

One can only hope that the patient is as concerned for his health as for his finances. The moral of this story is that safe, effective health care requires a reliable, comprehensive patient health record. Without such a record, whether on paper or computer chip, or accessed via the Internet, patients place their health in jeopardy. Moreover, we’re a society that prizes health care portability and convenience. Patients don’t stay in one place, so the information must be widely available. Patients on vacation still need access to their personal health data.

Provider’s Wish List

Health care providers have long desired a means to access a complete health record of every patient and have it available at the point of service. In an emergency situation, having this detailed patient information available in the ER can be lifesaving. Even a patient entering the hospital on a nonemergency basis is not in a position to be as clearheaded or articulate as he’d like. Knowing things like blood type, allergies, and current conditions and medications is vital to safe, effective medical care. Relieving the patient of the responsibility to recall these details from memory allows more confident medical treatment. The components of such an ideal patient health record include:

• Identification data. Who is the patient, and where does he live?
• Insurance and policy information, including eligibility and coverage rules, and medical account balances;
• An up-to-date record of the patient’s demographic data;
• A problem list of the patient’s significant illnesses, surgeries, and other medical treatments;
• A complete medication record, including a list of any medication contraindications and allergies;
• The patient’s most recent physical examination results, and reports on every examination since the record’s inception;
• A complete medical history of the patient, and a comprehensive family history of disease;
• Up-to-date problem notes regarding any condition for which the patient is receiving continuing care;
• Notes and diagnoses from any medical specialists the patient may have consulted;
• Any physician opinions, orders, or medical instructions that may have come out of routine office visits or consultations with specialists;
• Current and historical laboratory reports, including diagnostic tests, and routine blood, urine, and cholesterol testing;
• The patient’s blood type. As essential as this information is for emergency care, most patient health records don’t include the patient’s blood type. It’s worth noting that infusing mismatched blood into a patient is such a life-threatening medical error that physicians and clinicians must have absolute confidence in the accuracy of this information and in the identity of the patient the data purport to represent;
• Imaging and X-ray reports, including instructions on accessing the raw images online;
• Immunization records, including specific travel destinations for which immunizations were administered;
• Treatment authorization forms, and consent forms for admission and surgery;
• Operative, pathology, and discharge reports from any hospitalization the patient may have incurred; and
• A living will, including resuscitation directives and organ donor information.

A Useful Database to Put Things In

The items in the wish list represent a significant amount of data, but, with the exception of images, they can be stored as text files the patient could conceivably carry around as paper documents, analogous to a savings account passbook, or in electronic form, such as a “smart card” containing an embedded memory chip. However, the desire to access raw images such as X-rays, CAT scans, PET scans, or other radiological images makes such a “portable” storage method incomplete. Smart cards are subject to loss, breakage, or simply forgetting to carry them around. If the card is the only repository for current patient data, that’s a problem. It is easier to build backup and robustness into an online model. The preferred solution is to store much of the patient information in a secure, centralized data repository. Such a repository could conceivably hold many gigabytes of information on each patient. The patient’s record could be accessed using a smart card that provides a subset of information from reading the card and instructions for accessing more voluminous image files and comprehensive patient information from a centralized repository. Alternatively, access might be through a password- protected Web connection. The interaction could be much like sending and receiving email. However, gaining access to patient information by reading it from a card or secure Internet connection is only half of the story. The care and feeding of the databases are equally important. Once a physician treats a patient in the office or emergency room, he needs to update the patient’s information with the results of the experience. Information doesn’t magically appear in a central database after each office or hospital visit. Someone must put it there. This requires effort on the part of physicians who are understandably reluctant to take on additional administrative duties, or by assistants who must take on the responsibility of updating the patient’s record.

The Healthcare Insurance Portability and Accountability Act (HIPAA) has specified the standards and protocols for electronic data interchange upon which such a repository is currently being built. HIPAA standards and privacy requirements are providing necessary momentum for a secure, national medical information repository. Widespread use of such a database will require the development of easy-to-use tools by which health care professionals can update patient information, contributing to the care and feeding of a secure, interactive, centralized data repository. The system must make it simple enough to update patient information so that physicians don’t need to spend a lot of time doing it, while providing them with useful resources that they will perceive as making their updating efforts worthwhile. The current state of the art in this regard is still underwhelming, and large health systems are struggling to implement elements of a centralized patient health record. To date, none of these systems extends beyond the provider’s network of ambulatory and inpatient facilities.

In the United Kingdom, where there is a national health service, technologists have created a “data spine,” a centralized repository for all patient information. Each region is obligated to automate all general practitioner offices and hospitals with an electronic medical record system that will fully integrate with this central repository. The goal is for comprehensive patient information to be available at any point of service in the United Kingdom, with the ability to both access and update information stored in the central repository. They’re still struggling with providing the technology and the bandwidth to provide access to the huge quantities of information that will be necessary to communicate large files, such as images, back and forth across the network. Other international experiments with centralized data repositories include Malaysia, where funding problems have delayed the development of a “personalized lifetime health record.” This system will enable patients and providers to access complete patient information, including images, through the Internet. A significant feature of the personalized lifetime health record, and an important factor motivating its development, is intervening with patients to help better manage their care. For instance, a patient with diabetes will be sent reminders as necessary to make appointments for ongoing monitoring, or regular visits to a podiatrist.

Privacy and Security

HIPAA standards make it possible to talk about building a central repository of patient information. HIPAA’s most visible role is as legislation requiring providers and payers to maintain the privacy and control access to patient information. Failing to protect a patient’s private information carries significant penalties. As most patients have already experienced, HIPAA requires that providers inform patients that the provider acknowledges their rights to privacy. Patients can contact the provider to choose what information they want to restrict, and also choose who can and cannot have access to it. Many patients are unaware of their rights under HIPAA to view, copy, and supplement their health records. Patients are allowed to make sure their perspective of their condition and care make it into their health records. They may submit an informal amendment, or request that the provider make a formal amendment to their personal health records. What information might a patient want to change? In some ways, a personal health record is like a credit report. Patients need to take responsibility for checking the accuracy of entries made by doctors and nurses. Inaccuracies can result in inappropriate future treatment, and may reflect on a patient’s character. For example, if a provider investigates potential child abuse, and subsequent investigation proves the initial concern unfounded, the parents may want this information expunged from the family’s health records. Psychiatric conditions and treatment for substance abuse are particularly sensitive issues.

Wearing a Bracelet Is Not Enough

Many patients with chronic diseases or life-threatening allergies wear bracelets to alert caregivers to their conditions. More useful would be a detailed and up-to-date health record of each patient. Today, with existing systems and technologies, creating and maintaining such a record is neither simple nor convenient. Centralized patient information databases don’t yet exist in the United States. But, it is a very good idea for consumers to gather as much “wish list” information as is practical and make it available each time they visit a hospital or doctor’s office.

Consumers can get started by filling in forms available from Web sites such as My Personal Health Record (myphr.com). Until secure and integrated data repositories become commonplace, collecting personal health information and organizing it with the aid of such Web tools is probably the safest, most secure way to handle personal health information. Each consumer takes responsibility for collecting and maintaining his or her own health records. Some Web sites, such as WebMD, can help consumers build electronic health records, which are stored on the service’s database. Unfortunately, there are few safeguards to protect the privacy of the consumer’s information and to make sure it can’t be abused in any way.

A Healthy Partnership

Personal health information helps providers treat patients better and more safely. It opens unprecedented opportunities for better care and disease management. It can help reduce patients’ hassles in paying for medical care. When a patient is incapacitated, having reliable health information on which to base treatment decisions can mean the difference between life and death. The care and feeding of a patient’s personal health record must be a collaborative effort between patient and provider, a partnership that assures each patient the best results.

 

 

 

 

 

 

 

 

 

 

 

About the Author

Title: 

Partner and National Practice Leader, Clinical Transformation

Accenture

Manuel Lowenhaupt, M.D., is a partner with Accenture and the national practice leader for clinical transformation. He is internationally notedfor his work in clinical effectiveness, care management and clinical informatics, with experience in organizations in the United States, Canada,Europe and the Far East.