The Inevitable Downside of Personal Health Records

As personal health records become de rigueur in health care, might some provider send misinformation, either in the form of something wrong in a billing code, a mis-diagnosis, or a report containing a critical error? Yes. As with all information-based systems, the quality and value of the information you derive from your personal health record is directly related to the quality and value of the information that was input. Garbage in, garbage out.

It will take effort to keep a personal health record current and accurate. The level of effort required is dependent on what kinds of records are already available. Certainly in the early weeks and months of data assembly there will be more work to do than later on. Vendors such as Data Monitor, at, can assist with issues of currency and accuracy.

Privacy is a concern, not so much about hackers breaking into a server and lifting data, but rather how your personal records get levied about between providers, insurers, and other parties’ files. Ubiquitous WiFi connections mean that more consumers’ records are subject to the prying eyes of others. Consumers will be sensitive in cases where some of the data in their personal health record, such as information about sexually transmitted diseases, is something they prefer not to have in the record at all. The Health Privacy Project at the Center for Democracy and Technology is dedicated to looking at issues of personal privacy.

Identification and Security Issues – Protecting the privacy and security of personal health records while enabling the simple, ongoing exchange of information is everyone’s concern. Electronic prescriptions, for example, requires procedures to make electronic signatures both legal and verifiable. Unique identifying numbers are required for the reliable matching of patients’ records.

Some personal health record platforms allow you to delete records that don’t belong or to make notations when you disagree with a record or want to explain something. The ways in which the data can be accessed is vital. Protocols are vital for both the release and request of medical records for dissemination in a timely manner.

Whose property? A personal health record is an electronic health record controlled by the individual, who also decides who can view and use the information. By contrast, an electronic health record or electronic medical record is controlled by the hospital or doctor, not the patient. Personal health records must be the property of both the individual as well as their providers; Otherwise there is little recourse for devising an effective system of medical records.

Current guarantees, seals of approval, trusted vendor certifications, and other such protections, at a minimum, must be in place to ensure the sanctity of one’s personal health record. Security breaches, hacks into the system, breakdowns in data protection, and other violations of data and trust are all issues of concern. Depending on the nature of the information contained in one’s record, particularly for public persons such as a local politician, an executive or entrepreneur, or another notable community figure, rock-solid security of such records must be assured.

Accessibility and Continuity – Can one call into the system? Who is allowed to print the record and for what purposes? What occurs when the patient severs ties with a provider? How easily can a patient have his record permanently deleted, if desired?

Issues over access to one’s personal health record are likely to heighten in the coming decade. One of the basic features that doctors already want, and that masses will probably demand, is the ability to instantly see who has access to a personal health record and who has actually viewed it. Every system and every platform needs to guarantee users that their information will be handled with the greatest of care and consideration. Nobody’s data should ever be released without their consent.

Is a patient’s personalized record subject to data mining, even if individual identities are not disclosed? What role do cookies play in the storing of information on local computers? What happens when a patient dies? Should the patient’s record be accessible to executors? These questions and others will arise as vast numbers of the population gravitate toward this emerging and vital element of health care.

Implications for Your Hospital – Has your hospital developed personal health records policies and procedures? There is much to consider and much to do:

  • Within your own office or division of information technology, has your CIO or other top officer been involved in the personal health records progression?
  • Has he or she formulated a plan for your hospital to take full advantage of the forthcoming opportunities as well as a plan to deal with the forthcoming challenges?
  • Are your people attending the latest conferences on the issue?
  • Have they visited a wide variety of sites and vendors who are leading the way?
  • Have they established their own electronic personal health records so as to become familiar with the process, understand the intricacies, diagnose potential shortfalls, and be attuned to potential opportunities for your hospital?
  • Is the issue of patient health records one that makes the agenda on your weekly and monthly meetings?
  • Do you have a task force, ideally a permanent one, assigned to the issue?

What about among your own staff? Are you helping and encouraging your staff to initiate and maintain their personal health records and to include their families and loved ones as well?

  • Have you implemented or considering a hospital-wide campaign to include all employees, in medicine, administration, and support in the process?
  • Are you using your own doctors for purposes of observation as well as refinement of your own record systems?
  • What new ideas emerge as you become more fully involved with electronic medical health records?

Have you chosen to be a leader in this domain? Or is the issue of personal health records simply something you see as another in a long line of obligations or burdens? Taking a leadership position requires considering questions such as these:

  • Are there care guides that your hospital can develop for patients and other users?
  • Do you have interactive tools in the works that will help people make wiser decisions about their own health?
  • Is anyone within your office, or the hospital at large, developing applications for smartphones?
  • Are you working on health risk assessments?
  • If you have a wellness program in the hospital, are the fundamentals of that program transferable to online users, particularly those who maintain personal health records?
  • Do you have a health library in progress? Do you regularly update the library with self-health care tools?
  • Are you preparing daily health news feeds which give people a quick update and reminder of things they can do to take charge of their health while remaining appreciative of and loyal to your facility?

Going further, have you considered installing a bank of phone-based counselors to help people with their medical records? After all is said and done, what will differentiate your hospital and the services you provide from those of others is the personalized touch that you are able to offer to people who need real-time interaction with a voice on the phone, not merely alphanumeric symbols on a screen.

The more personalized attention you can offer to consumers, the greater the probability that they will stay with you as a provider over a wide range of needs.

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