Thank you for being a loyal user of the Revolution Health Personal Health Record. Unfortunately we will be discontinuing this service as of the end of February 2010 and removing all records, information, and data from the Revolution Health Web site.

So that you don’t lose the information you’ve entered into the system, we strongly suggest that you download your personal records as a PDF to print and save for future reference. To do this, simply follow these instructions:

1. Log in to your Personal Health Record.
2. From any page of your record, click on the “printable version” link on the top right corner of any page. When you see a pop-up box asking you to “Select the following sections to include in your print out,” simply make sure that the sections you want to print and save are checked and then click the “Submit” button.
3. Once the PDF is created (this only takes a moment), you can print directly from it and/or save it to your computer. To print the PDF, click on the printer icon at the top left of the page. To save it, click on the disk icon to the right of the printer icon.

If you encounter a problem printing or saving your records, please e-mail our customer service department at CustomerCare@revolutionhealth.com for assistance. Even after the Personal Health Record is no longer available, Revolution Health and our partner sites will continue to offer you the same great health information and community pages as always. We hope you continue to visit Revolution Health often to take advantage of our offerings.

Thank you,
The Revolution Health Team

The irony is that this message comes on day #2 of the national meeting of physician and other Kaiser Permanente leaders involved in supporting My health manager at kp.org, Kaiser Permanente’s personal health record.

As I asked people here what they learned in day 1, it’s basically the opposite of what is expressed in the message above. This is a personal health record that is thriving, with demand from members/patients continually increasing, and an internet services group working as hard as ever to deliver next-generation services. If anything, they have not appreciated how successful this personal record has become, and this discussion allowed them to stop for a brief moment and appreciate.

Here’s a slide from a recent presentation showing the growth in use:

I hope that people receiving the quoted message do not see this as a sign that personal health records are not desired or wanted by patients. The opposite is very much true. The difference is that a personal health record that provides what people want is something that is wanted (I know, obvious). Such a thing exists. Ask for it where you deliver or receive care.

Walker J, Ahern D. Insights for Internists: “I Want the Computer to Know Who I Am” [Internet]. Journal of General Internal Medicine 2009 Jun;24(6):0884-8734.[cited 2009 Nov 2 ]

Ok, this article isn’t titled that either, it’s titled Insights for Internists: “I Want the Computer to Know Who I Am” and it continues to complement the stream of information from peer reviewed literature that is more or less confirming what people who use robust personal health records already know. I discussed the issue of imaging test results earlier, as you may have read. That article was published in the radiology literature, which is significant, this one is published in the internal medicine literature, which is also significant. When the producers of the content themselves (internists, radiologists) convey what their patients want from them, it’s a powerful adjunct to the patients doing this themselves (and frankly, they’ve been doing it for a really long time…).

This paper was written by a team at Beth Israel Deaconness Hospital, and encompasses data from patient and physician focus groups conducted in multiple cities in 2006-2007. They asked them about how they manage their health information and how they would ideally manage health information. Some of the more important points:

• They mostly do it – keep their own records – except for the college student group
• They want full access to all the information. They know about their legal right to see their record, and understand that as currently constructed, this legal right doesn’t grant them functional access (think “73 cents”).
• Privacy: “worries that appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers.”
• “Strikingly, the health professionals professed far more concern about maintaining privacy than patients.”
• They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less

I both enjoy and get discouraged by reading this information because it should be more universalized than it is. But it will be. I’ll continue to invite the patient voice wherever I can, and continue to work with leading edge care systems (there are many) who take this information and innovate for patients.

With great thanks to the team at BIDMC and lots of nurses and physicians who are now asking the “why?” question about keeping things from patients. It reminds me of a letter I once composed to send to USA Today, that I never did, and through the magic of Mac OS X spotlight, I found it (and very quickly – amazing). Here’s what I wrote in 2005. Hmm..the passion didn’t fade.

In the USA Today article (“Prescription for Patients: E-mail”), the author felt from her experience that “patients could not be trusted not to abuse doctors time.” What we have known from the beginning is that patients can be trusted – they could always be trusted. And that’s the difference. We are supporting our patients’ trust in us, that we do not waste their time. Isn’t that what matters most?

This story just published in the Disruptive Women in Health Care blog shows what this approach can mean to a patient and their family:

Disruptive Women in Health Care » Blog Archive » Another Reason to Read Your Medical Record – A True Story

In this particular case, it was a pathology result that was not communicated to the patient.

Even though several leading edge health systems now routinely share lab test results with patients online, the regular sharing of radiology (imaging) and pathology test results, especially in an automated fashion, is still uncharted territory. In some states (Caliornia), sharing of some of these types of results with patients online is prohibited by law.

Why are pathology results (ranging from pap smears to biopsies) and imaging results treated differently?

The concerns range from fear of exposing patients to bad news as many of these tests are ordered with a high suspicion of abnormalities, to the lack of comprehensibility of these types of results, which are often not numeric, narrative, and very specific to a patients’ condition.

I put out two Twitter calls to ask about medical groups who have done this (automatically sharing imaging test results with patients), and I think this level of sharing of the medical record, along with the sharing of progress notes, is still anxiety-provoking.

If anyone reading this knows of medical groups who routinely share these types of test results with patients, or are patients where these results are routinely shared online, please post your experiences in the comments.

If you are not getting access to these results routinely in your care and you would like to get them, what would you tell your care team/health system to help them understand the benefit to your care and your health? Here’s what the author of the post on the Disruptive Women in Health Care blog had to say:

Although we may not think it’s our responsibility to read our operative report or a pathology report… it could mean the difference between a good or bad result in the best case scenario, or life and death in the worst case scenario. In the end, your health information is just that…..yours. No one will care more about it, or own it, in quite the same way as you.

I have the distinct honor of being moderated by John Moore of Chilmark Research, as part of participation on a panel discussion entitled, “Personal Health Records: What Are They Good For?” which will take place at the Agency for Healthcare Research and Quality’s Annual 2009 Conference, September 14, 2009, 1:00 pm – 2:00 pm.

Prior to the era of social media, the moderator and participants for a panel like this would get together on a phone call and figure out what they were going to speak about, and then provide the information during the discussion that they wanted to.

Actually, even in the era of social media they still do that.

To think a little differently, I asked John if he wouldn’t mind suggesting some questions on his mind as an expert in the field, and then if we could crowdsource these with a broader audience (John said yes to this request!).

That’s what this blog post is for.

So first, brief description of what the session is intended to cover:

In recent years, health care providers, insurers, purchasers, and technology companies have launched personal health record (PHR) initiatives. This interactive panel discussion will provide insight on the PHR marketplace, adoption levels, and the goals and impacts of their use.

Next, these are the very thoughtful questions that John came up with. In the comments below, feel free to

• Let me/us know which ones are of greatest interest to you,
• Suggest others that we haven’t thought of,
• Provide any answers you have from your own work in the field (we want to share leadership in all parts of our care system)
• Provide any general comments

Thank you for your help with this – The goal is to share information that’s as close to what the audience is looking for (audience-centered care). After all, we are doing what we do so that every patient in every care system benefits.

(questions from John Moore below)

Following are questions that have been swirling abut in my head re: adoption



What is the breakdown of populations/demographics that actually use the KP PHR?

Is it just the worried well, or Mothers?

Are their any conclusions that can be drawn?

To what extent due specific sub-groups use, or not use the PHR, e.g. are there any racial or socio/economic disparities?

What is KP doing today to minimize disparities and insure broader participation?

What about Chronic Disease grps?

Has KP found that certain chronic disease lend themselves to greater PHR use?

If yes, what are they?

Reflect on the role of the physician in encouraging adoption and use of a PHR?

Does consumer use require a a lot of guidance and encouragement?

What tricks as KP learned along the way to encourage broader adoption and use?

How has KP embedded the use of PHRs into physician workflow and driven adoption and use by the physician (that is assuming that KP allows the pt to add comments/notes to their PHR)?

The transition from acute to outpatient care is fraught with challenges and data drops. How has KP used the PHR to minimize such?

And on a related note, how does the KP PHR accept clinical data from systems outside of the KP network (not sure it even does that today).

Since the title of this session is PHRs, What Are They Good For, will need you and James to circle back to some of the broader attributes of PHRs to practice, behavioral change & improved outcomes. No need to mention such things as 25% fewer offices visits as this will kill of most practices.)

Trust that is enough to get you started and I may think of a few more …..

About a month ago, I posted a review of Safeway Foodflex , which intrigued me as a novel health management tool that uses data that is far more significant than that generated in medical care – what we eat. You can read the review here.  

I noted in the review that the site was down when I wrote my post – it was confirmed for me that this is because the site was in the midst of a major overhaul to improve its usability and focus. With that in mind I wanted to revisit to see what was different. I did get a little help understanding some of the features, but I have not spoken with the team at Safeway yet. They are of course welcome to comment/add information to what I write here!

The impact of transparent sharing

As the title of the post says, there is a really nice evolution happening here. First, its important to point out that the revolutionary concept that started with the last version is carried forward here – that your grocery will provide you (me) with the data we generate with our purchases and help us (me) leverage it for our health. Think about this for a minute – how much purchasing data do we generate in our daily lives, and how transparently is that shared with us?

A note about sharing personal data

In this blog review I struggled a bit regarding whether to share screenshots from my own account. Even though it’s perfectly legal, I have a rule in my professional life that I never demo my own medical record. My rationale behind this is that it’s poor form to use my account as a demo because it may unintentionally create an expectation for other employees/leaders that their personal medical information is sharable in public forums, even though there is no such expectation – my employer vigorously protects the privacy of its members/patients information. The better course is for organizations to create demonstration systems.

In this case, I decided that since I am a customer of Safeway and not an employee, that it’s okay since I’m not creating expectations for other customers or employees of Safeway. The application of the above is that I would not expect to see a Safeway employee demo this system using their own personal data.

I have blurred out my purchase details in any event.

Goal oriented: The case of sodium

I decided to focus on my intake of sodium, because I happen to dislike a lot of it in my diet, and as you can see from the screenshots below, I was able to go to household trend for sodium, zero in on a hidden source of it (fat free salad dressing, I really had no idea), find an alternative, and then see the impact on my trend. Slick.

What an improvement over conventional medical care today – in the doctor’s office we just don’t have time to review a person’s diet history, and usually just a few screening questions are possible, like “do you salt your food?” or “do you drink whole or nonfat milk?” I could imagine a nutritionist or a physician prescribing the use of this site with a goal to get sodium below a certain amount.

I think the site does a good job of not being prescriptive since it is not run by a health system – the focus is on USDA requirements without any valuation about whether there is “too much” of any nutrient. A health system involvement could make this a bit more relevant, by tying the results to clinical goals, however.

Future expansion

The site is not currently linked to Safeway.com for ordering of food. In addition, there still isn’t linkage to product images or food labels. I understand that this is a bit similar to the challenge in health care of putting drug labels and medication images together. It’s not an easy task.

Even more possibilities through integration of community and the health system

The site is a great example of Health 1.0 (and that’s a compliment, the competition is Health 0.0), through its liberation and simple management of the data. The power of this information included in a patient’s health record could be significant.

For example, in the future people could compare food choices with other patients who identify themselves with certain chronic conditions and maybe the quality of the management. You could ask, “Show me the shopping list of people with hemoglobin A1c’s under 7.0″

Or as Susannah Fox noted in a comment on the last post, “show me the shopping list of other families managing severe food allergies,” and “allow me to send a list of products (or evan a full shopping order) to family who we are visiting in preparation for a visit.”

In interactions with the health system, in a future world, maybe there could be a print format co-designed with a health system for reporting nutrient intake, and setting goals. In a world of HIT interoperability, I’d also be interested in standards for electronically conveying nutritional information into a personal health record, and ultimately into an electronic health record for use in medical care.

And of course let’s not forget even farther ranging applications, like Twitter integration (“Mother, I noticed on your Twitterfeed that your caloric intake is down over the past 2 weeks, are you feeling okay?”) and mobility.

A PHR for Food

I think Safeway’s work in this area should be watched and supported – I can imagine so many exam room conversations that could be impacted by a good discussion of what we eat. The foundation for those discussions is information – perhaps a discussion of Food 2.0 might be worthwhile at the upcoming Health 2.0 conference…..

Images: Click on any to see larger

I realize that there is ongoing discussion about this work, which I will link to here. I am still struck by Leavitt’s statement, which I tweeted here, which to me signaled the intent to overall to provide an environment where privacy is respected and patients have access to information that helps them be healthy.

So here goes.

1. The Nationwide Privacy and Security Framework for Electronic Exchange of Individually Identifiable Health Information

The goal of this effort is to establish a policy framework for electronic health information exchange that can help guide the Nation’s adoption of health information technologies and help improve the availability of health information and health care quality.

(again, thinking about Leavitt’s statement above)

INDIVIDUAL ACCESS – Individuals should be provided with a simple and timely means to access and obtain their individually identifiable health information in a readable form and format.

(more on this in another document)

2. Privacy and Security Framework: Introduction

This guidance is limited to addressing common questions relating to electronic health information exchange in a networked environment, and, thus, is not intended to address electronic exchanges of health information occurring within an organization.

(some patients get care from federated medical groups as part of integrated care systems that securely share information between providers when there is a need to provide care)

3. Safeguards Principle and FAQs

Does the HIPAA Privacy Rule permit health care providers to use e-mail to discuss health issues and treatment with their patients?

(this whole section is interesting, but just clipping the following part)

Patients may initiate communications with a provider using e-mail. If this situation occurs, the health care provider can assume (unless the patient has explicitly stated otherwise) that e-mail communications are acceptable to the individual. If the provider feels the patient may not be aware of the possible risks of using unencrypted e-mail, or has concerns about potential liability, the provider can alert the patient of those risks, and let the patient decide whether to continue e-mail communications.

4. The HIPAA Privacy Rule’s Right of Access and Health Information Technology

IMPLEMENTATION OF DENIAL The Privacy Rule further requires that denials of access be timely, written, provided to individuals in plain language, with a description of the basis for denial, and if applicable, contain statements of the individual’s rights to have the decision reviewed and how to request such a review. In addition, the notice of denial must inform the individual of how complaints may be filed with the covered entity or the Secretary of HHS. If access to some of the PHI is denied, the covered entity must, to the extent possible, give the individual access to any other PHI requested, after excluding the PHI to which the covered entity has a ground to deny access. See 45 C.F.R. § 164.524(d)(1).

However, where the covered entity provides individuals with electronic access to some or all of their health information, through a PHR or similar means, and the access is available to the individual at any time and without a request, it becomes more difficult to determine whether a denial of access has occurred and when notice to the individual is required. For example, the requirements in the Privacy Rule are flexible enough to permit a covered entity to notify the individual in advance of the types of PHI to which it intends to deny access and for which the Privacy Rule does not provide a right of review. See 45 C.F.R. § 164.524(a)(2).

(These appear to me to frame personal health records which show parts of a person’s medical record as implementing a form of denial of access which an organization should explain proactively, as opposed to “provision of limited access” which I think is what many organizations do today, without proactive explanation why some things are shown and some not)

There is a lot more in the documents that are relevant to someone like me and many people reading this post. I just wanted to highlight the ones that I noticed, again, with the intent I felt I heard in that conference room in Washington, DC. See what you think.

The parenthesis in the title are mine:

Before lawmakers act, they need to think: If stimulus money supports a proliferation of systems that can’t exchange information, we will only be replacing paper-based silos of medical information with more expensive, computer-based silos that are barely more useful. Critical information will remain trapped in proprietary systems, unable to get to where it’s needed.

I would suggest that we be concerned also about the proliferation of systems that keep patients’ health information opaque to patients themselves. The new HHS Privacy Framework, in my opinion, seems to open the door to this possibility (I will quote on it in a post tomorrow) – if a stimulus money is given to a system, should the system also be interoperable with patients and their families by giving them access to it?

Juhan’s HealthCard, originally uploaded by juhansonin.

I serve with Juhan Sonin on the CCHIT Personal Health Records Workgroup. Juhan is an expert in usability and design of personal health services (compared to myself, for sure) and is helping the group understand the potential for certifying for usability of personal health record services.

Juhan notes that he uses his own personal health informaiton in his designs, so I wanted to confirm that it was okay to repost here. Confirmation is below. It can be easier than it is today to know the health status of a person, yes? See what you think.

Thanks; I use the HealthCard during EVERY nurse/doc/hospital/insurance transaction. Amazing reactions from ppl.

Anything I post = public and abusable.
All should be CC licensed.

HACK and ABUSE at will.

Thanks Ted,
Juhan

Nifty wallet card by the way. May I post to my blog (I assume yes, since it’s on Flickr..)?

Ted

After using Safeway’s Foodflex (and I think that’s the link, the site is down during this writing for scheduled maintenance. I think http://www.foodflex.com works as well) I realized that there’s an organization that has as much if not more data relevant to my health as my health system does – the grocery store.

It’s a good thing that Safeway is making this data available to consumers, I hope there are plans to support this data in achieving its potential as a powerful part of a personal health record system.

I learned about Safeway’s innovative work in health and health care from Scott Shreeve’s blog and some of the writing of Jen McCabe Gorman (more relevant links to Safeway-related work are here) so I decided to give Foodflex a try.

The sign-up was a little rocky, and my belief is that I was starting to use the site while it was having a series of outages. However, the customer service support team was very helpful, and the site appears to have stabilized since I began using it. It does take a few days to a week after signup for a nutrition report to be available after your first shopping trip.

Just like the first time seeing my own medical record on a personal health record, it was impressive to see a list of all the groceries I have purchased. The reality is this data is being collected on anyone who uses a food-club card, I think we forget that this is happening, so it is nice to get some return. The graphs are somewhat helpful, and there is an opportunity to look at alternatives to food items that I’ve purchased which have a different nutritional profile.

I think the power of this data is in the ability to self reflect on what we are actually buying – the occasional jar of peanut butter is sometimes more occasional than we think, for example. Before I get into some of the drawbacks of the site, I don’t want to underestimate this point. It’s a big deal to be presented with food choices in an automated system like this. Imagine the possibilities that could come from sharing this information with your family or other professionals that you might work with. They are big.

The challenges of Foodflex come from the navigation of the data, and the inability to do more than a few basic things with it. There is the ability to separate or remove certain food items from the calculations that do not belong to a specific person, but the controls are fairly crude. The site isn’t very AJAX-y and requires some paging around to see all of the information.

Before I would criticize the site, though, I would remember my own experience supporting patient access to their health care data – it’s not as easy as one would think, and relative to one’s peers, it’s incredibly innovative. Based on that idea, I think this is good work that should be encouraged.

And, this data should be made available as part of a personal health record (which would require a beefing up of security, since you only need to provide a phone number at a store to add data to an account).

As my colleague Paulanne Balch, MD, from Kaiser Permanente Colorado, informs me, the #1 thing a patient wants to know after a a doctor visit is, “What should I eat?” Our food record is as important and maybe more important than our biomedical record. In the future, an API could be made available for this data to be securely delivered to applications that could assist patients with specific dietary needs or goals. Just as with the personal health record, availability of data is a great first step. And the beginning of a revolution of rising expectations, which is good.

With thanks to Safeway for their innovation and for demonstrating the possibilities of this part of our health record. By the way, I did contact the very nice customer service folks and offered to talk to a program manager about the product and its plans, but did not get a response. If anyone out there wants to comment, or show me more in depth parts of the program, feel free to contact me or post in the comments, I’m available…..

Most participants agreed that access to the EHR is a fundamental patient right and that the implementation of PAEHRs should not be delayed.

There was also an important discussion and debate about when results should be provided—in real-time, after physician approval, or after a specified time delay. A balance must be struck between making the information available to patients in a timely fashion that supports self-managed care and patient safety so that patients are not unduly stressed by complex and ambiguous information. However, it is evident that the health care community is currently divided on this issue.

Hey, I am starting to toy with the idea of E Visits, and getting paid for them. I have heard of few other groups that are making these fly. From your travels, have you come across any fee for service group that is making these work. It appears some third party payors are paying for them – up to $35 per visit. Hope all is well, Matt

I had some ideas of people who I could refer this question to, but wanted to refer it to the readers here, for their ideas. Matt said OK to post here with his name and organizational affiliation. Do you know of groups who are providing reimbursed e-visits and how is it going? Patient, staff, doctor perspectives are welcome…

Let’s help Matt support a patient-centered, results-only patient experience. Please post your ideas in the comments.

Congratulations to the patients and staff at The Everett Clinic on completing their EHR implementation – I see that they now have a link to “My Medical Record” at The Everett Clinic. Great job! Let’s see if Matt can also tell us how that part of things is going…

Grant RW, Wald JS, Schnipper JL, Gandhi TK, Poon EG, Orav EJ, et al. Practice-Linked Online Personal Health Records for Type 2 Diabetes Mellitus: A Randomized Controlled Trial [Internet]. Arch Intern Med. 2008 Sep 8;168(16):1776-1782.[cited 2008 Oct 27 ]

A news article that quoted my response to this article was titled “Mixed Results for Personal Health Record System” which is true for the PHR being discussed here, but just for this one. For right now. The team putting together this PHR is a great team that will get great results with greater patient adoption.

Why do I say that? Well, despite the statement early in the article that “To date, there have been no large-scale studies of interventions that integrate PHRs directly with the electronic medical records (EMRs) used by patients’ own primary care physicians,” there actually have been.

There was a really good one in fact, performed at Group Health Cooperative in Seattle, WA (my review of that one is here), with great results.

The other issue that worked against the study team is patient adoption of their PHR system. This is not an artifact of PHRs in general, because other organizations, notably Kaiser Permanente and Group Health Cooperative have been seeing “hockey stick” slopes of adoption for their PHRs (see a picture of this here). Because there weren’t enough patients signed up for the Partners PHR (only 244 patients in the study, out of 6553 possible), they could not detect meaningful differences, so we don’t know if there were any real changes following the intervention or whether there is just random variation. I was informed last week, that Group Health Cooperative just passed the 50 % mark for adoption of its personal health record by the adults served in its Western Washington service area. In Eastern Washington, they are not far behind, with 42 % adoption. That’s transformational in terms of care processes.

So the next question is “why is Partners’ PHR adoption low?” It’s a great system supported by a great team, and the patients that enjoy using Group Health and Kaiser Permanente’s PHRs are really not that different in terms of the conditions they manage. The key may be in looking at the environment that most of health care still operates in. This photograph that I took recently illustrates that.

Don’t count the personal health record out just yet. There are a lot of really dedicated physicians and other experts creating great systems who will do great things when our health care system supports the therapeutic potential of their work as much as it does that of the imaging suite. Fortunately in 2008, we now have evidence that we can get great results by involving patients in the use of health information technology to improve their health.

I wrote this month’s spotlight case in AHRQ’s Web M&M.

At first glance, this article looks like a traditional M&M (“Morbidity & Mortality”) review of an internal medicine case, replete with lab values, diagnostic discussions, and the like. However, the cases on this site stretch beyond diagnostics, as I found.

Bob Wachter, MD and his team invited me to write a commentary on a case about recurrent hypoglycemia that was about system supports rather than diagnostic and clinical errors. This included putting together all the thoughts on having an accessible EHR, patient and family involvement in care, and in the design of the system. The whole thing is in there, wrapped in a package for clinicians and those who support them to review and ponder.

It’s the spotlight case this month, and as I review it, I remember all of the people along the way who added this idea or that idea (and there’s many more to add). You’ll probably recognize yourselves in there….

With thanks to Bob and team for envisioning that a difficult medical case could be the foundation for a discussion about what Health 2.0 will do for our nation. See what you think.