November 2006


You know how it is when you hear or learn of something for the first time and then all of a sudden this newly found thing suddenly appears before you ALL THE TIME?

For example, years ago I purchased a Mazda GLC (short for Great Little Car – cute marketing). My roommate had never heard of it before, but once he saw it – and he thought it was, indeed, a great little car), he kept telling me over and over and over and over how often he now saw GLCs on the road.

They’d been around for some time but he’d never "seen" them before. His roommate – me – gets one and then, whammo! GLCs are everywhere.

Same thing with personal health records now. Not that my former roommate has called me out of the blue to tell me he, too, has started putting together his own personal health record.

No, this time it’s me. PHRs have been around a long time – years – but I only recently came to know about them.

And now they are everywhere.

In fact, according to a story that appeared October 24 in the Pittsburgh Business Times (and republished online at healthdecisions.org:

Starting in January, Aetna will roll out an electronic personal health record for its members, a tool designed to lower health care costs by encouraging preventive care and catching health problems early. Highmark Inc., too, is planning to introduce a similar tool next year.

Aetna believes offering PHRs to its members will save the insurer plenty of moola. Or, put in language that accountants love:

In a study of 39,462 people, the software saved $8.07 per month for each member in claims and resulted in 8.4 percent fewer hospitalizations when compared with members who did not use the program.

Although such programs are inexpensive to run, the value is still being evaluated, according to Dr. Don Fetterolf, corporate vice president at Matria Healthcare Inc., a health promotion consultant based in Marietta, Ga. The issue is getting members to use the program, and more importantly, changing behavior, to hold down costs, he said.

But what really caught my eye was this tidbit in the final paragraph:

Fetterolf predicted that such programs will continue to proliferate, even though questions remain about how many people will actually use them. "It’s the buzz," said Fetterolf.

I boldfaced that last sentence: "It’s the buzz."

So if personal health records are all "the buzz," I guess this means but one thing – the gossip tabloid magazine Star will soon will feature a headline like this:

                   "Brad Pitt Starts PHR for Maddox; Angie Swoons with Joy"

Many people have health issues. Heck, I’d venture to say all of us have health issues of some kind:

We may be facing a health crisis: breast cancer, AIDS diagnosis, infertility, Parkinson’s.

A family member may just have been diagnosed with Alzheimer’s disease or lung cancer or some other serious and possibly life-threatening illness or condition.

Or we may simply want to lose some weight. Lower our cholesterol. Eat more healthy foods. Cut down on sweets. Escape from a pack-a-day habit.

Whatever it may be, all of us experience health in one form or another and we may want or need a place where we can write about it and receive support and community while we do so. Yet we may be afraid to talk or write about it in public.

That’s where the folks at MyHealthMyWorld.com come in. They’ve created MyHealthMySpace.com, a community where we all can write – anonymously and absolutely privately – and receive support about our health issues, whatever they may be. And no one need know who we are.

Anyone can sign up for a blog diary at MyHealthMySpace.com. It’s easy to do so and it’s free. (I’ll be writing more about how to do this in future posts here at HealthRecordNews.com,) Diarists can then write as often as they wish. Other MyHealthMySpace blogging diarists will be able to comment, as readers of "regular" blogs can.

What, you may well wonder, makes MyHealthMySpace different from any other blog? After all, thousands of bloggers already write about health issues they may be facing in their personal blogs.

The difference is that your blog at MyHealthMySpace will focus on your health, however you want to write it, however you want to discuss it, however you want it to appear.

Do you want advice from other MyHealthMySpace bloggers? Ask for it.

Do you just need a place where you can vent – about your health, your condition, your mother’s condition, your father’s terminal illness, your child’s autism – and not worry that your family and friends will judge you?

Or do you want your effort to improve your health, your battle with skin cancer, your journey through your mother’s dementia to be of help to others? By writing about your own experience, you can help others as they go through theirs.

Whatever you want it to be, your blog diary at MyHealthMySpace is yours to create.

 

I thought I would break the flow of posts that have mainly been contributed by Jean and add my thanks for her commitment. In addition Jean recently interview a lady, who we call April to preserve her identity.

In the interview April answers some of the questions Jean has about the care April provided to her Mother and Aunt as she nursed them through the last chapters of their lives. The interview can be read at Caring for Elderly for Relatives.

Today, I want to pay tribute to ladies such as Jean and April.

Geoff

I’ve pretty much finished putting together a personal health record at ihealthrecord.com. The final pages of the record ask me to add information on my employer, my insurance provider, the pharmacy I use and hospitals I frequent.

Thankfully, I don’t "frequent" any hospitals right now, but I put down my HMO’s health care "campus" that’s in the town next to mine and leave it at that.

The final page asks me if I want to give anyone else "access privileges" to my PHR, which would "allow another person to view, but not edit" my information.

So I put in my husband’s name and click the "Grant Access" button and then this appears (I’ve removed private information and passwords):

You must PRINT and/or provide the information below to the individual who you are granting access to your iHealthRecord.

Instructions for [my husband] to access the personal iHealthRecord for Jean

1. Turn off any "pop-up" blocker software that is running on your computer

2. Go to https://secure.medem.com/healthrecord/view

3. Use the following information to Log In:

User ID = [They gave an ID here – which, you won’t be offended, will you, if I keep it private? Of COURSE you won’t, I’m certain of it.]

Password = [See above]

You will have access to a "read-only" version of Jean’s iHealthRecord.

 

I test it, pasting in the user ID and password given and then up pops a new window with a "quick view" of my entire record. My husband could just look at it on screen or print it out.

I could give "read only" access to anyone – my mother, my sister, my physician. My doc would have to save the user ID and password given her to my file in her office in order to read my iHealthRecord PHR online. Something I’m not sure she’d do – after all, giving her access to my PHR is my priority, not hers – especially since she already has an "official" medical record on me in her office.

But it certainly could help my husband and/or my sister in case of emergency.

I must admit – nifty!

 

I’ve been tooling around Google looking for articles and blogs on personal health records. Doing so, I came across this at Harvard University’s Program for Health System Improvement e-newsletter, an interview with David Lansky, Ph.D., senior director for health programs at the Markle Foundation.

Dr. Lansky is a vocal advocate for all things that will make the country’s health care system "more responsive and accountable" and he’s a big proponent of personal health records. In fact, he states in the Q&A article at the PHSI’s e-newsletter that it’s "inevitable" that PHRs "will become mainstream."

He also has a terrific definition of the differences between a personal health record and an electronic health record. He says it better than I ever could, so I quote his definition in full below:

Q: How does a personal health record differ from the electronic health record?

DL: With a PHR, the individual accesses and controls their personal health information and they decide who sees it and what is in it – including information from all sources of care as well as the patient. The EHR is a medical legal document that is under the control of and is the responsibility of a particular clinical care setting.

While PHRs are a terrific thing for patients, Dr. Lansky laments that consumers don’t yet use PHRs as they do online banking and other electronic tools that improve our lives today. Naturally, he has an opinion about what needs to happen:

Q: What are some of the barriers to PHR adoption then?

DL: Patients are more likely to use a PHR if it is recommended by their doctor – and few doctors are convinced that PHRs add value, rather than risk and burden - to the care process. And there are few standards for PHR data that would enable the patient to easily take her information to a new doctor or health plan.

Q: What will encourage uptake?

DL: The short answer is that most people, most of the time don’t want responsibility for managing all of their health information. Their information becomes much more important when they get sick and need to make complex decisions. We expect that PHRs will be more highly valued when they are able to deliver specific value to people with specific needs – like managing diabetes or caring for a parent with Alzheimer’s disease – and they will do that best when there is a national information network that allows critical information to be easily and appropriately shared wherever it’s needed.

So why should you and I care? Again, I’ll let Dr. Lansky speak for himself:

A PHR may have value even if your doctor does not use an EHR. A lot of your medical data is already available electronically and can be brought to your home computer – your medications, lab test results, diagnostic images, procedures and diagnoses. We shouldn’t delay using PHRs until all health professionals are using interoperable, connected EMRs – we’ll be waiting a long time.

 

 

 

I posted recently about my worries regarding having medical records online. My main concern: do online health records mean all the better for computer hackers to steal my personal information and run rampant with my identity and send themselves to Tahiti with my credit cards (and will they at the least send me a postcard)?

Turns out some folks in the know – folks who are privacy activists – think having an online personal health record could actually go a long way to protecting you.

The Privacy Rights Clearinghouse (PRC) has a nifty little primer on the Health Insurance Portability and Accountability Act (HIPAA), with a subfocus on HIPAA’s Privacy Rule. HIPAA was enacted by Congress in 1996 to set a national standard for the electronic transfer of health data. The Clearinghouse is none too hopeful that HIPAA will "restore your confidence that sensitive medical data is a matter between you and your doctor." Instead, according to the Clearinghouse folks:

HIPAA sets the standard for privacy in the electronic age where health industry, government, and public interests often prevail over the patient’s desire for confidentiality.

So what’s a person to do? The Clearinghouse lists several tips for ensuring your medical records remain private, including this:

Keep a personal health record. This may include copies of your medical files and other information related to your health such as diet and exercise programs. For more on keeping a personal health file, see the PRC’s Alert www.privacyrights.org/ar/keepmedfile.htm and the American Health Information Association resources on personal health files: www.myphy.com/what/index,asp.

This may include copies of your medical files and other information related to your health such as diet and exercise programs. For more on keeping a personal health file, see the PRC’s Alert  

 

 

 

Follow the first link and you’ll see that they issue a caveat:

Commercial products sold to organize and store your medical data vary from vendor to vendor. Just like paper records, data stored on your computer or a distant web site can be lost, stolen, or damaged. Electronic data — whether on your computer, a distant web site, or a data storage device — is also vulnerable to unauthorized access. If you consider purchasing one of these products, be sure to read the fine print, especially the company’s posted privacy policy. When shopping for technology, encryption is a must.

That first link includes even more tips regarding your medical privacy with a personal health record, either one paper-based or online. The list is long, so I won’t post it in its entirety here. But I will leave you with one that I never would have thought of, yet when I read it, I immediately saw how important it is and it’s something I’ll do the next time I visit my health care provider:

Exercise your HIPAA rights by ordering copies of your medical records as soon after your visit as possible.

They even provide a link to a sample letter you can use to request your medical record: http://www.privacyrights.org/Letters/medical2.htm.

I’m on the "Nutrition Support" section of the online personal health record I’m putting together at ihealthrecord.com. This section is of particular interest to my sponsors at MyHealthMyWorld, because I’m told that this section of the PHR they’ll be rolling out next spring will go into great detail about a user’s supplement use – more than your average online PHR tool.

At first glance ihealthrecord.com’s section on supplements looks insubstantial. The page asks you to check off some nutritional supplements, such as Pediasure (for children) or Ensure (for adults). You can also add comments about your nutritional peccadilloes or foods that don’t agree with you, so I put down that I’m "allergic" to avocado, zucchini and squash. (Let’s just say I go into gastric distress and leave it at that.)

In addition to supplements offered such as Ensure, Advera, and Glucerna there are also blank boxes where I can add some of the vitamins and other supplements I take. I fill these in and hit "save."

Then – since the page took me no time at all to complete – I click on "edit" just for the heck of it and what should appear but an additional page for each supplement I added.

For example, I filled in one of the boxes with a brief blurb that I take a half tablet of iron every five days or so. The "edit" page for this box lets me to go into a lot more detail, allowing me to answer such questions as "form" (tablet, capsule, gel, cream, etc.); "frequency" (daily, weekly, and so on); "directions" (take with food), and so on. The "edit" section also includes spots that allow me to check off if I’m currently taking this particular supplement, when I started taking it and when, if ever, I stopped taking it. I also get a big blank box for any "additional comments" I might wish to add.

I like the opportunity the record gives me to go into considerable more detail about my supplement regime. But if I hadn’t thought that the "Nutrition Support" page looked less than substantial at first and if I hadn’t then wondered if perhaps more meat was hidden behind this page’s less-than-obvious "edit" button, I probably would have left the information I first added to that section’s front page as it was. That is, sketchy. It would be nice if the page was more obvious in letting me know I could add considerable detail about the why, the how many and the how often.

 

I’m almost done putting together my online personal health record with ihealthrecord.com’s free service. So far, I’m quite impressed and now I’m at the part where I put in my emergency contact information,

But here is where I come across what to me is a huge – I mean HUGE mistake – there’s only room for one contact.

Naturally, I put down the name and phone numbers of my husband. But he’s currently in Pennsylvania while I finish up my employment here, pack up the house and close on escrow. I’ll be in Pennsylvania the week after Thanksgiving. What if something happens to me between now and then? My husband is about 3,000 miles away. Plus, what if he’s unavailable? There’s a three-hour time difference. He turns off his cell phone at night; his parents’ are hard of hearing and don’t hear phones ringing downstairs from their room (they also turn off their bedroom phone at night).

I could put down my mother. Or my father. But they live two hours away and my mom doesn’t drive at night and my dad doesn’t drive at all anymore. My sister? She’s in Arizona; I’m in California – you do the Mapquest.

But there’s room for only one. One. Better pick wisely; pick someone who is always available. Never sleeps. Doesn’t work. Always walks by my side, maybe even joined at my hip. Oh, where is my conjoined twin when I need one!

Wait. If I did have a conjoined twin, wouldn’t she also be injured were I to get in an accident?

So I’m right back where I started. Only room for one. Just one.

Sheesh.

Even Noah knew enough to leave space enough for two.

 

 

 

I’ve mentioned in a previous post how having an online medical record would have helped my husband take care of our daughter’s school inoculations as we make the move from California to Pennsylvania. That is, IF her medical records had been online.

But we recently had a real-life experience with online medical records and, I have to say, I’m sold!

My 79-year-old mother-in-law recently had a minor stroke. Very minor. So minor that she shows no bad aftereffects of it. None. No muscle weakness. No slurring of words. No droopy mouth. No mental impairment. It’s as if she never had it.

She spent two nights in the hospital while the health care professionals there gave her several tests — an MRI, cholesterol, blood pressure, checked her carotid artery and several others, so many that I don’t remember all of them.

Her regular physician is a member of the hospital’s staff and as she entered the ER, both her physician and the emergency room staff were able to call up her records — her personal doc from his off-site clinic, and the ER workers at the ER itself.

They were able to write notes about her care, which her regular physician read a few minutes or hours later. He also made comments, which the nurses and staff at the hospital could access at their convenience.

No waiting on the phone for the doc to come so that he could be read the results. No phoning back and forth. No driving to the clinic or hospital to get notes. It was all there, online.

 What a convenience. What a help. What a Godsend.