People are recognizing the importance of "wellness" (getting and staying well) and being active, informed participants in their health management decisions. Patients have a unique central perspective. Personal Health Records help patients and doctors to communicate and interact successfully. As new technology provides increasing opportunities for self-assessment and self-care, participants require convenient ways to keep track of what works and what doesn't. PHRs provide capabilities to record relevant information and keep medical professionals informed. For those seeking high quality, accurate, affordable, efficient and cost-effective healthcare, Personal Health Records are likely to become more and more indispensable.
Not so long ago, I thought that Personal Health Records were a waste of time. I have changed. Personal experiences have gradually turned me into an advocate for everyone to have one. In large part, the need for PHRs has been driven by changes in medical and healthcare technology and practices. With increasing specialization, coordination can become an issue. PHRs provide data to patients and their proxies that enables them to communicate more effectively with physicians and other providers. This leads to better decisions. PHRs are memory joggers. They provide important links between past and future generations, helping to spot trends and enable inherited conditions to be addressed before they become serious and chronic. PHRs can be indispensable ingredients in increasingly popular Wellness and Disease Management Programs. I regularly find new benefits and value from my PHR. Here are things to help you learn and put Personal Health Records in perspective.
First impressions are not always the right ones.
My first experience with health records was to create a list of medical expenses for an income tax return. It proved a disappointing waste of time. After listing all my expenses, I found that I was not eligible to claim a tax deduction. Since that experience, I was ready to dismiss the idea when PHRs were mentioned. Besides my experience, I could not see why anyone would ever need one. I thought doctors kept records for their patients and shared them with those who requested them.
PHRs are important in times of emergency.
When I watched victims of Hurricane Katrina and other disasters talk about losing their health records when paper files were destroyed along with their homes, doctor's offices and hospitals, I started to see value from PHRs. People had lost many different types of personal papers, but loss of health records was the most serious. Without records, it took doctors providing emergency treatment extra time to get up to speed and prepared to treat a patient. Any delay could mean the difference between life and death. If only there were some way for patients to inform their doctors and keep them that way. At the same time, disasters seemed relatively infrequent. I thought of priorities and realized the relatively low probability of needing a PHR to get better emergency care. There must be more reasons to have one. Furthermore, I was not sure what a PHR should contain to make it useful.
Their Value Proposition keeps growing.
As I thought more and more about PHRs, their value proposition grew. I found many ways to use them, making it especially important to have one. At the same time, I have wondered about the overlap between doctor's and patient's records, what each needs to have and how to update each other for the best possible decision-making information. Complicating matters, every doctor has needs, personal perspectives and preferences that differ from those of patients. Doctor's records are highly likely to vary from one doctor to another, and no one is likely to consolidate records unless doctors are part of a group that shares common data services. Nevertheless, I have realized more and more the importance and usefulness of PHRs. They can be essential to promoting and managing Wellness proactively rather than simply making assessments, determining problems, deciding what to do, and reporting and recording results. Their net benefit provides a high potential to gain considerable added efficiency and savings.
A personal experience gave me more reasons to have a PHR and ideas for making one.
In May, 2007, I went to see my doctor about a rash. He prescribed an ointment, but also told me to get a blood test in three months just in case I had Lyme disease. He gave me a form to take to the lab on which he wrote "August 23." This was supposed to be my reminder. Fortunately, he did not specify the year since that same time a year later, I finally got around to the blood test when my wife got one for her annual physical. After having the test, I scheduled my own physical. There was no Lyme disease, but at the appointment I learned that my doctor was retiring and that was to be his last week in the office. At that point, the two of us decided that I should get the exam from whomever I selected to replace him. I wished him well, and he gave me a couple of parting shots (tetanus and pneumonia) before handing me a brown envelope with a copy of my health record as I went out the door. I had asked for it since I decided to find a Primary Care Physician nearer home rather than stay with the doctors who took over his practice. Friends recommended a large medical group with a broad range of specialists a short distance away. For the most part, they provide "one-stop shopping." I found a list of their doctors on my insurance company's website and made a selection. When I went for my first appointment with the new doctor, I found that handing over that brown envelope did not relieve me of any responsibilities that I had to bring him up-to-speed.
Welcome to the New World of Patient Responsibility and Wellness.
Times were different. I knew that my role as a patient had changed when I was handed a clipboard with a very detailed questionnaire to fill out. From it, I realized how much I did not know about my health and that I needed to do something to become more informed. In the meantime, I did the best that I could, starting by answering the easiest questions. There were lots of things that I could not remember and needed to leave blank or provide vague answers. I could tell that the questionnaire was important and asked for a copy so I could try to find better and more complete information before I went back the next time. I also realized that the questionnaire provided insight into what should be in a Personal Health Record. Making a PHR looked like a job for a database. As with a word processor, it would enable me to add information little by little and print out an updated report whenever I went to an appointment.
Fortunately, databases are a specialty of mine.
I have created and maintained many of them for employers and consulting customers. However, there were things on the questionnaire that I needed to know that I had never been asked before. Questions were detailed and specific about my family history, all kinds of things related to my past healthcare, what I had done on my own, including diet, exercise, over-the-counter medications and types, reasons, outcomes and dates of encounters that I had with medical providers over the years. This soon became the tip of a very large iceberg that continually changes. As medicine continues to evolve and has gotten more and more specialized, healthcare has evolved from treating problems to refocusing its emphasis on Wellness. It attempts to anticipate problems and prevent them.
Promoting Wellness implies proactive care and necessitates greater patient involvement.
With the exception of the relatively few inoculations that I have received, most of my care has been reactive, a few broken bones, an almost fatal childhood disease, bee stings, spider bites and the like. First, I usually try to fix things myself. I also realize that collecting and analyzing data can uncover diseases that are inherited and trends in vital signs can warn of impending problems. Having data all neatly organized and consolidated into a Personal Health Record makes it easier for healthcare professionals to see at a glance what is going on. It serves as a checklist to inform and remind them of things that are most important to the wellness of me, the patient. As a patient I try to play a central and active role in collecting and organizing information that will enable others to make informed decisions on my behalf. It helps me to use a convenient, easy-to-use database tool, i.e., Personal Health Record software, to create reports that enable doctors to do their work successfully. Fortunately for me I had the skills to make my own database. Ultimately, I helped to start a new company that developed and markets an improved version. It is a team effort for doctors and patients to use a PHR effectively.
Start PHRs as early in life as possible.
PHRs are perfect for parents with babies. Over the years I have had illnesses and injuries that ideally should have been recorded in a PHR. I have forgotten important details. Some or all past experiences can have a bearing on health, and the care that is needed, years later. When I can, I play catch-up, adding more and more to my PHR as I remember and research the details. The same is true for inoculations. Many childhood diseases have become a thing of the past, but occasionally there are a few cases and people worry that they not have been protected. There are also many more inoculations to keep track of. Some require boosters. For example, at any age, people get boosters for tetanus and annual flu shots. Schools provide questionnaires for parents to fill out for new students and to enable participation in athletics. Although doctors may be asked to sign off on them, parents usually help with the answers. Later as children become adults, they have their own questions and questionnaires to answer. People may ultimately get too old and infirm to manage their own affairs. A PHR can be a helpful reminder at any stage of life although information needs will likely change over time.
Record-keeping focuses on the individual.
Record-keeping must be flexible and able to adapt to a person's changing needs. There is a significant downside to not being prepared for many of life's eventualities. A Personal Health Record, while probably the most important type of information to have, only represents one piece of the personal information we should have to manage our affairs. Records must be "personal" to be effective, focusing on what the user expects to gain from having them and is willing to contribute to the effort. It is easier to think of things that make a record more complete if it is done a little bit at a time over an extended period.
Other Considerations
People look at and do things differently. I thought about my annual tax ritual. Like so many others, I put off reporting until the last possible minute and barely meet deadlines. Because I wait, I invariably have more difficulty remembering and finding all of the information that I need. Consequently, the longer I wait to get something started, the more time-consuming and longer it usually takes. I try to compromise by finding ways that make things not only easier and faster, but also that will not require so much of my time all at once. Not waiting until the deadline means I have less to do at crunch time and am less likely to forget something. The same applies to Personal Health Records except they are always a work in progress. With PHRs, when they are needed, the more complete and accurate they are, the better. Since I realize that mine will never be perfect, I do the best that I can and rationalize that I am much better off than those who do not have one.
Records aren't necessarily kept forever or for as long as we may need them. This is true when we use an on-line service to make a PHR for ourselves. Even if we enter our own data, we will lose access to our data if we change to a different provider (insurance company, pharmacy, medical group) than the one that sponsored the initial web-based PHR tool. There can also be "Retention Policies" that prevent us from getting records years later. Our data may have been purged after a certain period of time even if we stayed with the same provider. Electronic data can also be lost if it is not backed up properly or if all the copies are lost or destroyed. A home database and backup can be lost the same way. Even if a storm is not on the way, it is a good idea to have redundant records widely dispersed. The master can be kept on a home computer or web-based PHR, and copies can be kept in a pocket on a smartphone or flash drive, and also on a remote data backup service.
Technology is unleashing progress everywhere. PHRs and healthcare will continue to improve. Whether it is car care or healthcare, we must do our part. We don't always know what to do, but realize that we should not have a car and only put gas into its tank. The parallels to personal health are things such as eating the right foods and getting regular checkups. We go to different auto centers and specialists and do things ourselves. Things can be overlooked and neglected. It is very unlikely that anyone will have a complete picture of what has happened. Deep down we realize that not knowing or neglecting something, no matter how insignificant, makes us susceptible to problems. Taking a risk is always a possibility. When problems occur or we want to schedule preventive maintenance, logs or records help automobile mechanics and doctors to troubleshoot problems and decide what is best for our cars and our bodies. Fortunately for us, automobiles have improved with more built-in reliability. On the other hand, although healthcare improves, we discover that our bodies are more complicated and challenging than we ever could have imagined. It can take a team of specialists to deal with them. As patients, we complicate matters when we withhold information from our doctors. A Personal Health Record has become an important tool enabling better communications and management of our care. It helps doctors and patients alike. It can keep everyone on the same page and aware of what others are contributing that could compromise their own efforts. We must be forthright with our doctors as well as ourselves.
In Summary: My PHR has changed my healthcare a lot. One will change yours, too.
Little did I realize how quickly longtime practices can be overturned and the impact that a PHR can make on getting the care I need. We are experiencing more and more mobility, finding increasing needs to access personal information whenever and wherever we go. We expect universal availability and security of our data. As care improves and I get older, I have found more ways to benefit from healthcare, but also that I have more decisions to make. Making PHRs for myself and helping loved ones with theirs is proving much more important than I expected. Using PHR software is helpful. I find that doctors are happy to provide encouragement and assistance to those like me who share a Personal Health Record with them. It helps them, too. Doing a little at a time gets the job done. It is well worth the effort.
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