
Personal Health Records and Mental Health
Personal health records or PHRs are becoming more and more popular these days as health information technology capabilities become more wide-spread. Look at Google Health as one example. The federal government has picked Google Health as one of four components of a Medicare pilot program in Arizona. The other three companies were HealthTrio, NoMoreClipboard.com, and PassportMD. Should all our health information be uploaded to the internet? What types of implications does such a PHR have on public health, disease management, and individual privacy?
First, on the population health level, I think that the use of PHRs will improve public health because of the availability of data to healthcare professionals. I have witnessed so many instances where a “John Doe” or a “Jane Doe” ends up in the emergency room with no identification and the doctors are playing guessing games to figure out what might be wrong with an individual who remains unresponsive. Did the person overdose on a drug? Is the person intoxicated? Did the person try to commit suicide? Did this individual have a stroke and pass out? These individuals are given generic names (like John Doe and Jane Doe) while social workers work to identify these people. Sometimes they are homeless individuals who lack ID. Some are people who got intoxicated, lost consciousness, and also lost their ID. Others have some type of mental illness and may be psychotic or actively hallucinating. Without identification, these individuals may claim to be anyone. Providing healthcare professionals to valuable patient data will only improve public health in this country.
On the disease management side of things, PHRs will help with medication tracking. So often, patients are prescribed different drugs from different providers. The primary care provider may write for one drug, and then the psychiatrist may change that drug or add another. Patients can often get confused about their medications unless they have them written down in a place where all their doctors can see the list. A PHR can allow this to happen. Electronic health records used in hospitals and physician offices have tremendously made an impact in public health and disease management. Doctors now have automated reminders that are popping up for their patients. Their computers may remind them of dangerous drug interactions and other potential adverse effects of prescribed medications. These are the types of tools that were missing twenty years ago. Patients often have access to the same type of resources if they are using an intelligent PHR system that can alert them to drug-related side effects and warnings.
Finally, privacy remains a very important piece of the PHR puzzle. If your health data is on the internet, could someone gain access to it? Could someone even change it? These are some of the common questions that get asked these days. These are certainly legitimate questions and as information technology improves and security measures increase, people should have less to fear about. The government feels confident enough to award these four major companies access to Medicare patient data, so we know that someone feels OK with electronic PHRs.
References
Medicare Selects Four Companies Where Beneficiaries Can Maintain Their Own Personal Health Records Medicare Press Release, November 12, 2008.
J. Myers, T. R. Frieden, K. M. Bherwani, K. J. Henning (2008). Ethics in Public Health Research: Privacy and Public Health at Risk: Public Health Confidentiality in the Digital Age American Journal of Public Health, 98 (5), 793-801 DOI: 10.2105/AJPH.2006.107706
Alexander S. Young, Edmund Chaney, Rebecca Shoai, Laura Bonner, Amy N. Cohen, Brad Doebbeling, David Dorr, Mary K. Goldstein, Eve Kerr, Paul Nichol, Ruth Perrin (2007). Information Technology to Support Improved Care For Chronic Illness Journal of General Internal Medicine, 22 (S3), 425-430 DOI: 10.1007/s11606-007-0303-4
Victor Strecher (2007). Internet Methods for Delivering Behavioral and Health-Related Interventions (eHealth) Annual Review of Clinical Psychology, 3 (1), 53-76 DOI: 10.1146/annurev.clinpsy.3.022806.091428
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Rich Life Carnival #24…
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Finding out what has been prescribed to a patient is one thing. The other is to find out what he’s actually taking. There might be a substantial difference. Of course sometimes I’d like to hack into some drug history database, to find out which brand the obscure little red pills might be.
From my point of view, health IT often is designed to satisfy administrators, not doctors. And huge collections of personal data offer greatest benefit for administrators and companies, not doctors. Not to mention patients.
What was the point in looking for data on John Doe who neither can remember his name, nor his 11-digit access code, again?
Behavioral Healthcare magazine had a special section on PHRs over the summer. See (it’s a long link):
I think that the key question is about the extent in which we will allow someone to do data-mining on those records.
In a few years we will get DNA testing for very low prices that allow us to have the DNA for a lot of people in those online records.
There is a huge interest for people who are searching which gene variations have which effects to get access to those big data sets which index millions of people.
The commercial interest to data-mine those records is too big to expect people to completely stay away from that attempting to data-mine.
One we have those big data sets it might become easy for some lobbyists in Washington to promise to be able to cure cancers if they can use those huge data sets to increase our knowledge about cancer.
We need to have a discussion about what privacy entails and the price that we are willing to pay for the privacy. We need to know both the monetary price and the number of deaths that we are willing to allow to occur by not doing more radical data-mining to increase our knowledge of the human body.
Christian-
The potential for research is definitely huge if we were to get all this health information online, but a simple solution would be to only allow data-mining to be done in aggregate, with individual personal identifying information stripped away. The same sort of database already exists for the spinal cord injured and traumatic brain injured populations in Europe, as well as in the United States with the Framingham database for the study of heart disease.
Data mining is often done for the purposes of aggregate reporting. All the private health information is depersonalized, and this information is often evaluated by managed care plans and other interested parties such as pharma/biotech interested in market research.
DNA is private information.
If you know height, weight, eyecolor, haircolor and hundreds of other factors about a person you might identify them without knowing their name.
In addition someone might run a DNA test against a person he knows in a 1000$ DNA test world to be able to access their medical records (you don’t even need to know the whole DNA).
You can’t really depersonalize DNA without losing valuable information.
There will be people who want to use every information available and use supercomputers with very complex algorithms to learn something from the data and compare how hundreds of variables influence each other.
As mentioned earlier, having information online available for MD’s caring for John/Jane Doe is not effective until a patient can tell you who they are (verbally or via ID), this of course depends on the information being accurate (not an alias).
Only when online personal medical information is held to the same standard of privacy as medical records in a hospital, and same security as bank accounts, would I ever subscribe to it. As mentioned by other comments, its important to examine whom this service is intended to serve.
I found this an excellent post on a very professional blog, and have selected it as an Editor’s Pick in the latest Carnival of Personal Development (Edition 3). Great job spreading awareness of PHRs and getting people to think about how far this should go.
PHR (Personal Health Record) is an invaluable tool for tracking vital records and creating a medical history of your general health over time. Maintaining good health is too important to ignore, and this personal health record is an easy to use portable health care supplement. Foods supplement Proleva controls my PHRs and maintain unwavering. I ordered online at http://www.proleva.com 10-day trial pack.