This week’s photograph was taken on the National Mall, where the movie “The Apartment” was being shown as part of HBO’s Screen on the Green Series.

There was an interesting dialogue between Jack Lemmon (who works in a large insurance company) and Shirley McLaine (who’s an elevator operator in said company) in this 1960 film:

BUD
They got a great little band at El
Chico, in the Village — it’s
practically around the corner from
where you live.

FRAN
Sounds good.
(a sudden thought)
How do you know where I live?

BUD
Oh, I even know who you live
with — your sister and brother-in-
law — I know when you were born –
and where — I know all sorts of
things about you.

FRAN
How come?

BUD
A couple of months ago I looked up
your card in the group insurance
file.

FRAN
Oh.

BUD
I know your height, your weight and
your Social Security number — you
had mumps, you had measles, and you
had your appendix out.

They have now reached the corner, and Fran stops.

FRAN
Well, don’t tell the fellows in the
office about the appendix. They may
get the wrong idea how you found
out.
(turning the corner)
‘Bye.

Many people in the audience were laughing during this part (and I assume many in this crowd probably are very engaged in these issues), and it made me think about how we got from there to here, and a thought provoking question: Did HIPAA solve a problem or is it a band-aid on a bigger, deeper one?

Lastly, on this gorgeous summer evening, I also encountered a curiosity of this series, the HBO Dance, which is choreographed to the opening theme many in my generation remember before the days of cable. It’s always good to dance, and laugh, every day - and that does happen in Washington!

Video posted below, along with a bonus image of the crowd.

Free Movie, originally uploaded by M.V. Jantzen.

• Is worker wellness a privacy issue? - Nice article from Jane Sarasohn-Kahn. A reminder that people want to how the data is used to help them. Same thing with patient access - demonstrate how it helps care, and the balance of privacy and utility becomes more even.

May 10th through May 13th:

• Be Well Mobile, Patient Engagement Software that works - cell phone platform for disease management
• Medical Advances—Through Your iPhone? - Portable applications in health care that the iPhone could enable.
• Scientific Misconduct Blog: LSD and the corruption of medicine (Part III): Naming names - A chilling account of experimentation on US citizens without consent
• Texting may help teens remember meds - CNN.com - Cell phones as a tool in medication adherence.
• The Open Secret of Success: Financial Page: The New Yorker - One of the best summaries of what Toyota does well that I've seen.
• ITIF: Explaining International Broadband Leadership - Summary of broadband access in the US and other countries
• Ruthsarian Layouts - Some helpful CSS layouts for blog design

Yesterday, I wrote a post about my visit to Sonoma, California, and the health care that MiVia is enabling. Heidi Stovall then gave me a tour of the application, and allowed me to take screen shots of it to post here. All of the information in the screen shots are not from real patients, so there is no personal health information being displayed.

Let’s take these one by one. And here are the images that go with the tour. Click on any to see full size.

1. This is the patient login, and includes their identification screen. Notice the LAC. That’s a “Limited Access Code” and allows a selected person access to the information, for example a care provider in an emergency.
2. A chart note. This allows a provider to document right into the patient’s personal health record. An interesting paradigm - the customer of this system is the patient, not the provider (sort of how I think these systems should be designed). Important to remember that these patients typically do not have medical records in other EHRs.
3. The printable ID card. I mentioned yesterday that this is not an actual ID, but to the users, it signifies “belonging” to something. At the same time, it can be given to a provider to signify that “there is a place you can go to learn about my medical and dental history.” It’s worth noting that my health plan offers this, but via a telephone service, not through the Web (I can access my own information, but I do not have an access code I can give to someone to do it for me).
4. A medical summary report. A easy place to find out about a person’s medical and dental conditions.
5. Sharing preferences. The patient can automatically add their record to the roster of a participating provider. If they do not add this, the provider can also add the patient by getting access code information. Again, the heritage of a patient-centered application is apparent. I think this looks very simple and understandable.
6. Pain and symptom diary. What’s significant here is that the patient-centered nature of this record means that patients can document in it as much as providers can. It’s a basic interface to be sure, but physicians know that a cornerstone of pain management is for patients to document what they are feeling.
7. Dental Records. Again, a basic interface, but it’s a bit of a breakthrough in my experience to combine oral health and general health in one place. From the patient perspective this makes total sense. From the physician perspective, we are used to segregating “medical” and “dental.” Why? Tradition? Because we went to different professional schools? I think the patient’s way is the best way.
8. CCR Export. I think this is one of the most promising features. It’s clear that this is a group of patients that are unlikely to be served by a health system with a tethered PHR, and one of our findings is that a tethered PHR is not the only way to serve patients. What if this subset of the community could upload their record to a tethered system, for example, if they receive care in a tertiary care hospital, or if they obtain a specialty consult in a system that has an EHR? In this case, they will still use MiVia as their portal. The idea is that the specialty care provider could either document here (copy their note), or send a CCR export to MiVia.

Here are some thoughts:
Read the rest of this entry »

Legal and Policy Analysis: Personal Health Records: Why Many PHRs Threaten Privacy, World Privacy Forum

2008 Survey of Health Care Consumers, Deloitte Center for Health Solutions

Actually we do want access to our own health information. The title is a reference to three things:

1. Personal Health Records, why PHRs May Threaten Privacy, published by the World Privacy Forum.

I think this is less about not using a Personal Health Record (PHR) and more about understanding HIPAA, and its useful. The paper states clearly that the discussion is a different one for HIPAA-covered entities (such as Kaiser Permanente and Group Health). I would recommend that people review the information or at least the summary document to be familiar with what an organization can or can’t legally do with personal health information. I think that’s the key - even if an organization states it is not going to do something, there may be no legal protection if they change their mind.

So could a personal health record threaten privacy? Sure. Is it a reason not to use one? That’s a personal decision of benefits vs risks. I think it would be a challenging statement to say that these concerns should keep all Americans from having access to their own health information, and certainly the situation is different for HIPAA-covered entities, where there is both access and legal protections. I also think that we should not rely on information technology to create trust for us using software, or the system we have long been waiting for will never arrive.

2. Deloitte’s 2008 Survey of Health Care Consumers, published by the Deloitte Center for Health Solutions

This is a very well done representative survey sample of Americans with regard to health care with a focus on online access an alternative treatments. The conclusion is very clear: consumers want access to information created by themselves with their physicians, hospitals and health plans. And only 6 percent have this access. So, a huge discrepancy between what people want and what they are getting.

I keyed in on some very important statements, that buttress a fact from my travels, that “uninsured does not mean uninformed”:

The attitudes and preferences of the uninsured mirror those of the insured

Interest in online appointment scheduling, e-mail access, and online access to medical records and test results is equally high in the uninsured and insured groups.

There was a similar attempt at creating “personas” of the various consumer groups in this paper, much as we did here, for the stakeholders we are working with. I would say that the technique is less effective in this report because the personas aren’t based on standard terms and are likely to be forgotten. In the health system world, it seems easier to segment by known groups, like Gen X, Gen Y, baby boomer, or by insurance status or by care system.

One other item of note is that 60% of respondents state that they are on medications. That’s an impressive number, especially when I think about the power of the compounds that we prescribe today. Having access to one’s information is more than a convenience. I wrote about a real-life example that I encountered recently, on my blog.

3. Google. See for yourself. I think this ties together a lot of the ideas above. John Halamka makes some comments about HIPAA and the Google product based on his experience being on the Google Health Advisory board. I think patient-centeredness may become mainstream. Comments are welcome of course.

• Center for Health System Change - Physicians Moving to larger practices - Important to know about shifts in physician practice makeup in terms of targeting patient access.
• Whose Data Is It Anyway? Expanding Consumer Control over Personal Health Information - CHCF.org -
• L.I. Hospital Scrutinized After Deaths of Patients - New York Times - This very sad story brings up the issue of patient safety as a function of providing patient access. Is it possible that a patient might identify correctly that the specimen tested was in error if they looked at the report also?

PCHIT links for January 30th through January 31st:

• Group Offers Doctors Bonuses for Better Care - WSJ.com - “Far Reaching” seems an accurate description. This could really drive PHR adoption.
• Personal Health Records Online? Just Say No! - Commentary from the Patient Empowerment Blog at About.com. I’ve added my own comment at the bottom.
• Project Health Design Blog: Minimal federal government impact on PHRs in 2008? - Discussion of the federal role in PHR development from the excellent HealthDesign blog. If not useful in designing PHRs, what about in incentivizing them, such as part of current HRSA grant programs?

PCHIT links for December 24th:

• Life as a Healthcare CIO: Standards for Personal Health Records - To prove a point about portability, John Halamka, MD, posts his medical record on his blog, in unstructured and structured formats.
• Health Privacy - Health Privacy 101 - HPP Releases Best Practices for Employers Offering PHRs. A good primer on PHR practices for employers.

PCHIT links for December 13th:

• New E-primer ? The Need to Know: Addressing Concerns about Privacy and Personal Health Records - Quote:”Project HealthDesign teams have found that while confidentiality is important to end users, they are often willing to share personal information in exchange for specific benefits and functions? “
• eCWusers.com :: An Independent Users Group for eClinicalWorks - A user forum that is publicly hosted by users of the eClinicalWorks EHR
• Create a personal MedActionPlan? for every patient - Interesting approach to guiding patients on medication regimens
• EMR - Electronic Medical Records and Practice Management for Clinical Practices by eClinicalWorks - eClinicalWorks Patient Portal information
• HIMSS - National Capital Area - Forum on focusing on the consumer in health care, January 17, 2008

Last week, Josh and I went to visit the headquarters of the National Partnership for Women and Families, hosted by Deven McGraw, the organization’s Chief Operating Officer. Deven also happens to be part of PCHIT’s Advisory Group.

We were stimulated to learn more about the National Partnership because of Deven’s experience in health policy and consumer issues in health information technology. For me, I really enjoy learning about the passion and energy that creates organizations dedicated to the empowerment of people. That’s the same energy that fosters patient-centered health care and the technology that supports it.

Deven showed us some of the landmark legislation that the organization’s founders helped enact, including the Pregnancy Discrimination Act, and the Family Medical Leave Act. These protections are ones that we now take for granted; seeing them on a wall is a reminder of the work it took to make them part of our society.

Josh and I then discussed some of our experiences to date about PCHIT, and we talked about factors supporting the adoption (or lack) of Personal Health Records, especially the privacy component. The conversation was a really good one for me, because I come from a health care organization with a very visible commitment to privacy and consumer empowerment.

Deven spoke of her own experience with a PHR offered by her health plan. She indicated that she was not able to sign up to use it, and even counseled her colleagues accordingly, because of ambiguous language in the invitation from the health plan about the use of data entered into the PHR. It says something significant when one of the strongest proponents of of the use of a PHR cannot use the one offered to her by her own health plan.

After our conversation I went back and re-read the privacy policy of Group Health Cooperative’s MyGroupHealth web site. It says:

(ghc.org privacy policy)Group Health Cooperative does not make underwriting or insurance coverage decisions based on our members’ use of the MyGroupHealth site. We do not monitor individual use of health information resources, such as Healthwise® Knowledgebase* or Group Health Cooperative health information pages.

I recall this language as being present since the site was launched in 2000. It has not changed since then. This was a moment of reflection as people have asked, “How has Group Health achieved significant adoption by patients?” We haven’t really seen anything but high adoption. Maybe that’s because of both the policy and the very compelling nature of a connection to the patient’s actual care team, which is what MyGroupHealth offers. I hadn’t really put the two together as requirements before our talk with Deven.

Is it possible that language like this (backed up with behavior to support it) in PHR invitations and privacy notices would improve adoption? And by how much?

We learned in our visit that up to 32 individuals in the National Partnership Office did not adopt a PHR because of this issue.

At the same time, though, Deven and the National Partnership are working to find solutions, through service on the Confidentiality, Privacy, and Security Workgroup of the American Health Information Community. It also houses the Health Information Technology Consumer Principles, which serves as a guide for others.

With thanks to Deven McGraw and the National Partnership for Women and Families for demonstrating, as with the legislation on the wall, what I/we take for granted in one environment is something that still needs to be worked toward for all of society.

If readers have thoughts on their own experiences signing up for PHRs and comments on the invitations they’ve received, feel free to post them here.