Consumer Preferences and the Consumer NHIN

On October 5, the Office of the National Coordinator released the Consumer Preferences Draft Requirements Document which highlights the policy and technology requirements to ensure that all data exchange - PHRs, EHRs, HIEs, Public Health, Quality, and Research - protects confidentiality by following the preferences of the consumer for data sharing. It's an important document and definitely worth reading.

On October 13, HITSP held a Town Hall Meeting on Consumer Preferences to discuss the requirements document and collect public comments for submission to ONC. You'll find the audiocast here (as MP3) and the presentation here (as PDF).

At the October 14 HIT Standards Committee meeting, David Blumenthal emphasized that we need to expand the scope of our NHIN thinking to include consumer health information platforms in addition to the provider and government organizations that have been the focus to date.

What does this all mean? The focus on consumer consent, privacy, and security as the foundation of data exchange will accelerate interoperability.

A few thoughts:

1. As the Chairman of NEHEN, a Health Information Exchange in Massachusetts, I know that consent management (policy and technology) is a very important first step to implementing interoperability. To coordinate care, improve quality, and measure population health, we need data and patients need to trust our HIEs so that we can share data for their benefit.

2. Policymaking can constrain technological complexity. If every possible permutation of consent (opt in, opt out, segmentation of the record, approval for sharing at the institution level, approval for sharing at the provider level, approval based on the situation - emergent care or not, etc.) needs to be supported by every stakeholder exchanging data, then the number of standards needed will be significant. Ensuring comformance with a large number of standards at every point of data exchange will be challenging. In my experience, something simple such as opt-in consent for data sharing at the institution level, will result in much more privacy because the security technologies required to support it are simple and easy to understand.

3. Although provider to provider data sharing will always be important, the notion of sharing data with the patient who then shares it with others per their consent preferences is a viable alternative approach. However, we need to maintain the integrity of the data from its source to its use by ensuring the data is not modified or the context of the data changed along the way. Jamie Ferguson from Kaiser Permanente wrote a great blog about this issue.

My ideal plan for consumer preferences would be

1. We develop national policy which clearly delineates the types of consents we need to support. Ideally, this will be a short list. I prefer consumer opt-in at the institution level. To be compliant with ARRA and state laws I can imagine this being expanded a bit to include very basic segmentation of the record into mental health, HIV results, and everything else.

2. This consent will be recorded electronically and made available via a health information exchange, the PHR of the patient's choice, or via a mobile storage device such as a USB drive. When a patient presents for care, the consent is queried, and all data exchanges follow this declaration of confidentiality preferences.

3. The standard for recording consent would be XML-based and not require a "wet signature" or an image of a signature. I realize that some state laws still require handwritten consents, so policy work is needed here.

Given all this activity regarding consumer preferences, control, and empowerment, let's hope the policymaking gets done by 2011 and the standards to support the policy can be simple to deploy and manage. The more complex meaningful use data exchanges in 2013 and 2015 depend upon it.

Addendum: John Moehrke has published an excellent blog outlining how current HITSP standards can support this vision.

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Food Allergy Survival Guide: Monday Review

The Food Allergy Assistant loves to learn something new from a food allergy book. I just learned that eating raw dough from a gluten-free batter can cause stomach upset. The batter contains uncooked bean flours which can lead to the tummy trouble. I learned this while reading "Food Allergy Survival Guide" by Vesanto Melina, Jo Stepaniak and Dina Aronson.

I was asked to review a copy of "Food Allergy Survival Guide", which boasts "living well without dairy, eggs, fish, gluten, peanuts, shellfish, soy, tree nuts, wheat, yeast and more". Quite a tall order!

The first half of the book is devoted to food sensitivities. There is a conversation about the differences between food allergies, food sensitivities and food intolerances. For the remainder of the book, the term "food sensitivity" is used. The authors share a wealth of information in the next several chapters about how to read labels and manage nutrition planning. An entire chapter is devoted to wheat sensitivities and Celiac disease.

The second half of the book consists of recipes that avoid the top eight allergens. All recipes are vegan as well, which is less clear until the reader peruses the recipe section. The recipes will be a godsend for those who have multiple food allergies, sensitivities and intolerances. If that same person follows a vegan lifestyle, this book is a complete match. Those with fewer dietary limitations, will be able to modify most of the recipes to bring in the foods safe for them and avoid those that aren't.

I found two pages in the back of the book to be of enormous help. They contain a chart listing vitamin and mineral needs at various ages and stages. This is so important when trying to meet nutritional needs in the midst of needing to eliminate major food groups.

So, does the Food Allergy Assistant recommend "Food Allergy Survival Guide"?

Yes. I believe this book should be one of the resource books for people dealing with food allergies. I don't view it as a beginner primer on food allergies. For those newly diagnosed, the interchangeable use of "allergy", "sensitivity" and "intolerance" may lead to some confusion. That said, I see it as a guidebook, in addition to other resources, to help those who deal with multiple food allergies.

Check out the book's website to learn more.

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Homemade Candy Corn

Trying to find safe candy corn for your child with food allergies?

Good luck.

Nearly all of them contain labels like, "manufactured in a facility with peanuts, tree nuts, dairy and egg". So, when I came across Cafemom's recipe for making your own candy corn, I couldn't resist.

We did it last night. We only had green and pink food coloring in the house so they look like Easter candy corn, but they taste like the real thing. Honest! And they're jumbo size, which the kids love. You can cut them smaller if you like.

For those of us with dairy allergies, use dairy free margarine (like Fleischmann's Unsalted Sticks or Earth Balance) in place of the butter and Vance's non-dairymilk alternative for the powdered milk.

Let me know if you're adventurous enough to give this a try!


Photo: BOWL OF CANDY CORN
© Ingrid Perlstrom | Dreamstime.com

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Cool Technology of the Week

Keyboards can be a major vector for infection.

Imagine that "typhoid Mary" types on on keyboard then walks away.

Imagine that an H1N1 carrier coughs on a keyboard and you are the next to use it.

My cool technology of the week is a self disinfecting keyboard from Vioguard.

How does it work?

Using high power germicidal UV C light at a 254nm wavelength, it disinfects the keyboard after each use, killing bacteria and H1N1.

It's expensive - about $899 - but certainly could be an important part of hospital infection control.

My own experience is that membrane covered keyboards which can be wiped with sterilizing cleaners are hard to use and messy to disinfect.

A regular keyboard with self disinfecting features that is easy to use and simple to maintain.

That's cool!

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Apple Picking Time

One of the reasons I enjoy living in New England is seasonal expectations- the renewal of Spring, the outdoor joys of Summer, the colors and harvest of Fall, and walks in the silent forests of a snowy Winter.

In the Fall, we harvest our squash, pumpkins, and root vegetables, pack up our garden for the winter, and go apple picking.

Our favorite spot is Old Ciderpress Farm in Westmoreland, NH with 65 varieties of heirloom apples. You'll not find many of these species in your grocery store.

Angie and Marius Hauri are the very friendly owners who provide great advice about the best varieties to pick on a given day. In addition to a pound of chestnuts and a gallon of cider (which we helped press), we picked (descriptions are from University of Massachusetts Cold Spring Orchard)

Empire - This cross between the best-selling red varieties Red Delicious and Mcintosh was introduced in 1966. Empire has proved superior to the parent it most resembles, Mac, in redness, flavor and post-harvest life. The creamy white flesh is crisp and juicy. Right off the tree, Empire is an excellent choice for eating out of hand if you like a loud, snapping apple that's sweeter than it is tart. Empires are frequently added to cider blends and can be used for cooking. In storage these apples keep their quality well.

Fuji - Fuji was developed from American parents, Ralls Janet and Red Delicious. It signals the reemergence of taste and texture as the main reasons for growing an apple. The cream-colored , firm, fine-grained flesh seems something special from the first bite, as it fills the mouth with sweetness and juice. In taste tests Fuji consistently scores at or near the top, and among late-maturing varieties it is a standout. Fuji is regarded as the best keeper of any sweet variety, and the apples retain their firmness for up to a year in refrigeration

Gala - Gala was developed in New Zealand by J.H. Kidd, crossing Golden Delicious and his own Kidd's Orange Red. The pale, creamy flesh is crisp and dense, with a mild, sweet flavor and good aroma. The fruit is not large, but medium in size. In taste tests, Gala easily outscores McIntosh and is considered more sprightly than Golden Delicious. Gala is also used in many cider blends. This apple stores well when refrigerated.

Golden Russet - Golden Russet is an early American apple, believed to have sprouted from a seed of an English Russet, It was a commercially marketed variety by the early 1800's. The yellow flesh is crisp, fine-textured, and brightly flavorful, with a noticeable sweetness that made it a traditional favorite for hard cider. The apples can be used for cooking and drying. As with most russets, the apples keep well.

Liberty - Described as the most trouble-free of all apples, Liberty is the result of years of work by fruit breeders to develop an apple that would free growers from the endless rounds of repetitive spraying. Released in 1978 by the New York State Agricultural Experiment Station, Liberty has lived up to expectations. A cross of Macoun and an experimental apple variety, it is a deep red apple with great eating and baking qualities. The fruit is medium to large with rich yellow skin overlaid with dark red stripes and splashes. The pale yellow flesh is crisp, tender, juicy, and quite flavorful. Ripens in October and improves in flavor over a couple of months of storage.

Our favorites - I'm a Fuji lover, my daughter likes Liberty, and my wife likes Empire.

A crisp apple and a mug of cider on a cold New England Day with a light wind and falling leaves. Definitely apple picking time.

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Milk Allergy Desensitization Study

So, this is it. The final installment of 11 year old Brett's video diary of his participation in Children's Hospital of Boston's milk allergy study. He's been participating in a desensitization study getting small amounts of milk over a period of time. Six months have passed since he started. This video tells the end. Has he been cured of his milk allergy, or must he continue to avoid milk?

So, go watch it. Then come back so we can chat.

Go on...

Tick Tock

I'll wait right here...

See, still here.

Okay, so you've seen it? Cause spoiler alert right here. The outcome is about to be revealed.

Amazing, right? This milk allergic boy is cured! He can drink milk and is eager to participate in more food allergy studies so he doesn't have to read labels any more.

This is incredible news for all of us who care about someone with a food allergy. We're getting there. Maybe our kids won't have to worry about their children being diagnosed with food allergies. Wouldn't that be wonderful?

What did you think of the video?

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The October HIT Standards Committee meeting

As I discussed in yesterday's blog, the focus of the October HIT Standards Committee was Standards adoption and implementation.

The day started with comments from David Blumenthal. He briefly described the Nationwide Healthcare Information Network (NHIN) as an evolving vital element of our national health information strategy. He emphasized that we need to expand the scope of our NHIN thinking to include consumer health information platforms in addition to the provider and government organizations that have been the focus to date. He also noted that we need to move from pilots/prototypes to scalable real world implementations, establishing the right governance mechanism for the NHIN.

The Clinical Operations update followed and included a discussion of gaps in the current work. We started with a discussion of patient access to an EHR. Should we include clinical summaries, the entire record, or the standard data elements that can be exported to commercial PHRs such as Google Health and Microsoft Healthvault? We heard about experiences at Kaiser, Geisinger, BIDMC and others. It's clear that PHR data sharing is very heterogeneous at the moment and that convenience transactions such as appointment making, medication renewal, and referral management may be more important to patients than full access to every aspect of their record. The HIT Policy committee will be asked to define minimum requirements for patient access to EHR data.

We discussed needed enhancements to vocabularies including a national SNOMED-CT to ICD9/ICD10 mapping, RxNorm mapping to National Drug File Reference Terminology (NDF-RT) and Standard Product Labeling (SPL), a standard lab compendium for ordering, UCUM guidance and testing, and a national infrastructure to distribute and maintain codesets. I discussed this need for enhanced vocabulary tools in yesterday's blog. Our action item today was to create a Vocabulary sub-Workgroup that will address these issues and propose priorities and solutions to the entire Committee and ONC.

We heard an update from the Clinical Quality Workgroup about the re-tooling of quality measures to be more EHR-centric. Good progress is being made.

Next, we focused on privacy & security. Dixie Baker and Steve Findlay summarized a few updates to the standards matrix - SOAP 1.2 is the current recommended version and per evolving federal guidelines (NIST SP 800-63-1), Kerberos will be allowed but not required for 2011 because Federal systems will begin disallowing Kerberos in 2013. NIST SP 800-63-1 is cited as implementation guidance for "Level 2" certification criteria for authentication, but we've been careful not to impose Federal FISMA criteria on the private sector.

We discussed enhancements to privacy and security standards efforts, especially for 2013, including:

* A healthcare specific XML schema and vocabulary for representing subject, resource, action, and environmental attributes in security assertions i.e. SAML for healthcare

* A standard XML schema and vocabulary for representing consumer consents i.e. my CAML proposal

* Baseline security and privacy policies for the exchange of EHR information

* Standards for exchanges between the healthcare enterprise and the consumer

* Specification of Health Information Exchange assumptions and associated privacy and security policy. This relates to my blog yesterday in which I noted that policy guidance is really essential to pick the simplest set of security constructs needed to protect confidentiality.

Our action items today were

1. To spend the entire November HIT Standards Committee meeting hearing testimony from stakeholders on Security issues.

2. To work with ONC to ensure seamless communication and coordination between the HIT Policy Committee and HIT Standards Committee regarding privacy and security issues

3. To specify our assumptions for HIE information exchanges and share those assumptions with the Policy Committee so that they could specify a policy framework that then could serve as the basis for constraining security and privacy standards. One of our committee members noted that policy constrains architectural possibilities, enabling selection of the simplest set of standards needed to meet requirements.

Given the emphasis of the meeting on adoption and implementation, we discussed next steps regarding our new Implementation Workgroup. Specifically we will arrange for a day of testimony on October 29 from many stakeholder groups to better understand adoption and implementation issues, needs for enhanced implementation guidance, and identification of enablers that would accelerate interoperability such as new tools or filing standards gaps. We'll also conduct an online forum and accept written testimony. This feedback process is very important to ensure rapid cycle improvement in the standards making and standards selection processes. Per my blog yesterday, this will help with resolving the outstanding common data transport issues.

We ended the meeting with a discussion of the results from the privacy hearings conducted by the HIT Policy Committee on September 18.

Thus, we have action steps to resolve all the issues I raised on my blog yesterday - alignment of policy and standards activities to create the parsimonious set of security standards to protect confidentiality, a working group to resolve outstanding vocabulary issues, and a feedback process to resolve common data transport and other standards adoption/implementation issues.

A great meeting and I look forward to our day of implementation testimony on October 29 and our day of security testimony on November 19.

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