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Can Technology Help Baby Boomers Take Care of Aging Parents?

“Your mom has cancer and needs an operation.”

These words took me on a odyssey through our medical care delivery system that was opaque, uncertain and just plain frustrating.

And I am a doctor.

I could only imagine how difficult it must be for the average person to help guide a loved one through the maze of seeing multiple specialists, obtaining second opinions,evaluating reliable treatment options, communicating with other concerned family members, and avoiding wasteful redundant procedures.

Along the way I confronted common issues which many of us experience: Where do we go for another opinion? Will several doctors communicate with each other? How can we be sure relevant medical records are available to all providers? Is it really necessary to fill out those dumb forms all over again? Does insurance cover this? Where can we find trustworthy sources of local information? Can we speak to others who have been through this before us?

The problem is that our current health care delivery system does not encourage this sort of patient empowerment and open communication. The traditional doctor-patient relationship is a hierarchy, with patients treated within a “silo” for services which are pretty much exclusive of those outside the system. The recent push by our government to collect medical data by means of electronic medical records and “accountable care organizations” has only made this matter worst, with over 600 registered vendors selling branded solutions which do not communicate with each other.

Yet everyday millions of people are using the internet to openly communicate with each other, exchange data such as photo files, explore new streams of knowledge, and build personalized social networks. Facebook has already taught over 800 million people how to use a service that is simple, open, inexpensive, mobile, and universally available anywhere there is access to the world wide web.

So I asked where I could find such internet services for the health care space. I discovered that there were a handful of “PHRs”, or Personalized Health Records, such as Microsoftfs HealthVault or Google’s Health. These services allow you to enter and store your medical information on the “Cloud”, where it resides in remote servers and is retrievable on the internet. However, since there was no mechanism to share this information, the sites were an underwhelming success, and in January 2012 Google withdrew support for its site.

The chief criticism of these PHRs is that they were designed by big technology companies who think they know what their customers want. But what if, we asked, a health care site were to be designed from the bottom up, from the point of view of what patients and their care-givers really need, and not all the other stuff.

The HealthBook Project was founded as an innovative service which respects stressful life situations, such as getting a second opinion or caring for an elderly parent, and enables health care consumers to gather, organize and share health information in one logical place online.

It begins with a family member creating a personalized web-chart for a parent. The cyber chart displays their photo as well as profile information like date of birth and allergies. A simple questionnaire asks about past medical history, family history, and relevant information such as insurance and power of attorney. The site is designed for people who say “I will never ever use a computer.”

Medical files are stored in digital form and may be accessed by anyone who you invite to become part of your network. All invited members of your health team are displayed on your health chart, and a direct secure message may be sent to any of them by merely clicking on their picture. Not only does this “private email” loop permit safe secure messaging, but it ensures that all decisions will be shared among every member of the health team.

Another major social networking trend today is “Peering”, commonly referred to as the “wisdom of the crowd”. At its most basic level, when you go to buy a book from Amazon, rather than reading a book review from a single critic, you can read the reviews of dozen of your “peers”. When applied to health care services, this trend can be very powerful. Joining a group online to discuss an experimental treatment protocol or finding sources of moral support can be very important. Several interactive websites are already finding an appreciative audience, such as IHaveCancer.com and PatientsLikeMe.com.

A digital chart on HealthBook permits easy access to these disease oriented websites, or you can form your own group. For instance, you may be interested in joining a group which calls itself “The Cyberknife Treatment Group of Greater Philadelphia” or “The Normal Pressure Hydocephalus Club of the Delaware Valley”. In addition, the Health Book Project provides a convenient platform to access the hundreds of health oriented computer programs or “Apps”, such as Telemedicine, which allows participating providers to remotely monitor blood pressure, sugar levels, or medication compliance programs.

Our design team is trying to make a product which we ourselves would want to use. We are determined to close the gap in health care service delivery between innovation and consumption. We have developed a product specifically to help baby boomers like us who are involved in the care of an aging parent.

We believe that connecting patients, family members and clinical teams can improve health and wellness for our loved ones. We have found that there are many people who will enthusiastically embrace a product such as HealthBook that makes it easier for them to store and share medical information. We believe that for the next generation of health care consumers we are going to need a next generation tool which unlocks the power of the internet for the average person. My mother’s story turned out well. Through a neighbor who happens to be a radiation physicist, we found out about a new treatment modality which was comparable to surgery. As a physician, I was able to convene a meeting of several key providers, who came up with a safe and effective plan of treatment. However, I wish I had had access to a tool such as the Health Book Project Elder Care to help store and share my mother’s medical information, discover and discuss new treatments, and coordinate care among several involved health care providers. We are hard at work on it and invite people to try it out and give us feedback.


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Boomers Resource Guide is a special supplement to the Senior Citizen's Guide