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ONC Presents Personal Health Records Roundtable: Report from Washington, DC

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Day in Washington, DC at PHR Roundtable
This post was blogged during the meeting, and may be reviewed and corrected in the next few days. Please see links to the videos at the end of this post.

PHR Roundtable, Washington, DC
PHR Roundtable, Washington, DC

Washington, DC, (December 3, 2010)–The meeting is getting started today with introduction by Joy Pritts, Chief Privacy Officer, HHS/Office of National Coordinator (ONC)  for Health IT, and welcoming remarks by the National Coordinator David Blumenthal, MD. Dr. Blumenthal is speaking about the process of innovation spurred by HITECH, and not directed by ONC. “The patient and consumer come first” is one of the guiding principles for ONC according to Blumenthal, and the consumer’s faith in the privacy and security of their patient information is critical to the HITECH initiatives. Part of the reason for this privacy and security hearing is to encourage innovation and transparency, one of the over 200 open meetings held already by ONC.

Pritts also notes that the Health IT initiatives are focused on patients as the center of healthcare. Now we’re on to role of “Meaningful Use,” providing patients with electronic version of their health records. HITECH Act requires that ONC study privacy and security with regard to those records, in addition to the current requirements. Pritts asks  how are we going to strike right balance of innovation and maintain the use of that information for intended purposes.

First panel will provide some historical perspective and is focused on origins, development, and security practices. Tim McKay, Kaiser Permanente, provides brief on Kaiser’s use of electronic health records and personal health records which began in ’90s as regional Kaiser initiatives, and took on national scope in late 90s. Currently Kaiser has roled out EHR and PHRs. Is this patient portal or PHR? And the answer is “yes.”

Lori Nichols, Director, HInet, is director of Whatcom Health Information Network in Whatcom County, Washington state. Per their Web site, “HInet is an inclusive, secure, community-wide, healthcare intranet in Whatcom County. Using various broadband technologies, it connects hospital, payors, physician offices, and community health services.  It also provides connection to the Internet.”

George Steinberg, MD, president and ceo of ActiveHealth Management, a company started with venture capital and now owned as separate company by Aetna. Started as decision support for physicians, and grew to consumer tool. Consumer PHR contains decision support to respond to consumer entering data dynamically.

Colin Evans, CEO of Dossia, a PHR company describes how the firm was founded for employers for use by their employees for safety and care coordination. Use by employees ranges from 10% to 80% based on whether company is offering incentives or not. Evans claims that data is owned by consumers. In some cases there are conflicts between HIPAA regulations and FTC regulations with regard to online protected health information.

George Scriban, Sr. Program Manager, Microsoft HealthVault, speaks about consumer interaction with healthcare as something that goes much beyond interaction with clinicians. HealthVault is cloud-based location for fragments of health information gathered from full-range of entities, improving the boxes of a patient’s information located throughout the house and clinical offices. HealthVault is not a PHR, but a personal health information platform, per Sriban, one of Microsoft’s constant refrains.

McKay of Kaiser Permanente is starting a large initiative to expand Identity Services, to maintain their information even if they leave Kaiser plans.

ONC moderator Kathy Kenyon asks “Do patients ever pay for a PHR?” of those represented. Panel answer is no.

Panel moves on to revenue sources and sustainability of consumers are paying.
Dossia: Support by employers.
Kaiser: From consumer dues. Savings comes from cost savings in employer time saved. In 2006, about 20% of Kaiser patient population used PHR, and risen to 60% in 2010. Patients viewing their patient information alone raises safety of patients.
HInet: no charge for consumers, currently grant-funded, but there will be a  charge for Smartphone use. Employers and payers are noticeably absent from financial support, and this is due in large part because consumers don’t want insurance companies and employers to view their personal health information.
Microsoft: HealthVault is a free service, that is part of the larger health services unit with services offered commercially, the revenue source.
ActiveHealth: Paying customers are the employers, with PHR one of services offered. ActiveHealth is offered to 8 million Aetna members and close to 2 million non-Aetna users, with another 700,ooo non-Aetna users expected to be announced shortly. Non-Aetna users are based on offering to employers (need to confirm who these non-Aetna users are).

Additional discussion on opportunity of health plan or employer viewing health information on PHRs. Dossia says no to employers. HInet users can see who has and has not accessed their share plan PHR  since the last time the consumer viewed their PHR.

Lack of physician support and interoperability of electronic health records appears to be a limiting factor to actual use of PHRs.

New Forms, New Audiences, New Challenges–Second Panel
Wil Yu, Special Assistant of Innovation and Research, ONC, is moderating panel on PHR’s new forms, audiences, and challenges. Stephen Downs, Asst. Vice President, Robert Woods Johnson Foundation, is responsible for Project Health Design, a 4 1/2 year old program to reinvent PHRs; Open Notes, where patients can view their physician’s notes; and Blue Button.  Downs offered three themes: separating apps from data, expanding definition of healthcare–ODL, observations of daily living, and sharing data.

Darcy Gruttadaro, Director, NAMI Child & Adolescent Action Center. NAMI is National Alliance on Mental Illness. Since launch of its social networking site in April 2010, NAMI has gained 1,300 users for social networking site, modeled somewhat after facebook. Realizes there are a lot more security issues than she initially realized. NAMI social networking site: http://www.strengthofus.org

Description of NAMI’s social networking site:
“StrengthofUs is an online community designed to empower young adults through resource sharing and peer support and to build connections for those navigating the unique challenges and opportunities in the transition-age years.  StrengthofUs provides opportunities for you to connect with your peers and offer support, encouragement and advice and share your real world experiences, personal stories, creativity, resources and ultimately, a little bit of your wonderful and unique self. It is a user-generated and user-driven community; so basically it’s whatever you make it. Everything here has been developed and created by and for young adults with you specifically in mind…because we think you’re worth it! We hope every time you visit, you find hope, encouragement, support and most of all, the strength to live your dreams and goals.”

John Moore, of Chilamrk Research, says the terms EHR and PHR create an artificial barrier. “People could care less” about PHR as file cabinet. Unified or collaborative health records need to be actionable Moore said. Moore made a great segue to Gail Nunlee-Bland, MD, interim chief of Endocrinology and Director of Diabetes Treatment Center, Howard University, referencing his Chilmark post “Smashing Myths & Assumptions: PHR for Urban Diabetes Care.” That post is certainly worth reading, and Nunlee-Bland mentioned that 85% of their inner-city patients have access to computer and Internet, which is not what the “general knowledge” says. While Howard’s PHR users are concerned about privacy, only about 5% of their potential users, have opted not to use it because of privacy issues.

Douglas Trauner, CEO, of TheCarrot.com, asked what do we need to do for overcoming healthcare, privacy and security issues. TheCarrott.com’s web site describes  itself: “TheCarrot.com provides easy-to-use tools for tracking your life for a variety of topics including health, nutrition, fitness, and medicines—all within a familiar calendar format. Through this free, anonymous service, you gain a comprehensive view of your health that helps you identify areas of improvement and goal-setting.”

There’s a lot of discussion about sharing information among consumer/patient users. Panelists offer range of views about how much consumers are concerned about privacy and security. There’s a great deal of discussion about trust, including Downs’ tale of a teenager being quite willing to share lots of personal information with their 80 friends, but not their parents.

Privacy and Security of Identifiable Health Information in PHRs and Related Technologies: Expectations and Concerns – Panel Three
Joy Pritts is moderating the first afternoon panel session. Tresa Undem, VP, Lake Research Partners, said consumers are generally unaware of PHRs, based on a year-old study when only 7% reported using a PHR. Lee Tien, from West-coast based Electronic Frontier Foundation, specializes in privacy laws, not healthcare privacy. New reports from recent FTC survey shows how little public knows about privacy issues. Josh Lemieux, director of Personal Health Technology, Markle Foundation, based on six surveys, said public likes the idea of personal health records, and also say they want privacy practices.

Robert Gellman, reported on privacy issues and concerns about data leakage based on long experience, starting with working on the Hill. Strong need to define of what we’re trying to do: http://www.bobgellman.com/

Key data research resources for this panel:
http://www.chcf.org/publications/2010/04/consumers-and-health-information-technology-a-national-survey
Conducted by Lake Research Partners

http://connectingforhealth.org/resources/surveys.html
Consumer surveys of privacy and personal health records

Tien says there is a basic ignorance among consumers and patients of actual privacy policies and implications. Based on work by Microsoft privacy expert, Tien cited the change of attitude or reality of public and private areas.  It used to be that privacy was the default reality for people and it was hard to get known publicly. Currently, public knowledge of details about people is the default reality, while maintaining privacy is a challenge.

Perspectives on Privacy and Security Requirements for PHRs and Related Technologies — Panel 4
Moderator is Leslie Francis, Distinguished Professor of Law and Philosophy at University of Utah.

Adam Greene, JD, Senior Health IT & Privacy Specialist, HHS Office of Civil Rights explained that HIPAA jurisdiction does not follow the data. OCR oversees three kinds of covered entities plus direct jurisdiction of business associates. Greene asked and answered:  Are PHRs covered by HIPAA? Sometimes–yes when furnished by covered entity or provided on behalf of covered entity.

Loretta Garrison, JD, Senior Attorney, Bureau of Consumer Protection, FTC uses unfairness and deceptive prongs to protect consumers. Bureau is claims driven. On December 1, 2010, FTC issued Privacy Report and recommended a privacy framework for consumers, businesses, and policymakers.
Here’s the link on press release.
Here’s link to actual report titled “Protecting Consumer Privacy in an Era of Rapid Change: A Proposed Framework for Businesses and Policymakers.” And it’s a preliminary FTC staff report.

Joanne McNabb, Chief, California Office of Privacy Protection, is “chief cajoler” and not a regulator.

Greene spoke about how HIPAA requirements are not really a check list but dependent upon the particular circumstances and business processes. Greene also wanted to disabuse people of the notion that they have 60 days to report a breach event of Protected Health Information (PHI). In fact, they are required to notify HHS of a breach on 500 individuals or more as quickly as possible, no later than 60 days.

FTC does not have specific rules about breach notification, except in case of PHRs, based on HITECH.

McNabb spoke of prohibition of marketing from data in PHRs, and also be careful about using mobile devices to move PHI. California’s Privacy office Web site is http://www.privacyprotection.ca.gov/

Garrison said we heard alot about trust today and trustworthiness. Per Ponemon report on security, that there was not enough support for healthcare privacy and issues in hospitals. Security is not a check list; it’s an ongoing process according to Garrison. Garrison also expressed concern about location of PHI on the 18 of 20 PHRs that had gone out of business since John Moore had studied them.

Second subpanel section
New group of panelists consists of three lawyers and law professors.

Robert Hudock, JD, Counsel, EpsteinBeckerGreen sees keysecurity issue is integrity. Sees smart phones as more secure than computers. Suggests that we let mobile devices and security evolve, and don’t restrict it while still developing. Hudock’s biggest privacy issue is for the average person being able to protect the confidentiality of  family’s information.

Frank Pasquale, JD, Schering-Plough Professor in Healthcare Regulation and Enforcement, Seton Hall Law School, lauded Markle Foundation’s emphasis on identification of versioning. There are many issues around research. He really worries when data is collected from various sources, and the digital self created from those sources. Pasquale identified several technological solutions and books.

Nicholas Terry, Chester A. Myers Professor of Law, Saint Louis University School of Law, asked what we mean by security. Data scraping is one of the issues of great concern to him. Trust is big at moment, but Terry said he doesn’t know what trust means.

Session ended with brief period with public comments.

Videos
Morning Session: Morning session video
Afternoon Session: Afternoon session video
*Please note: Apple QuickTime is required to view the video. To download and install QuickTime, visit www.apple.com/quicktime/download

For PHR Roundtable information on ONC site, click here.

Personal Health Records ONC Roundtable: Dec 3 Webcast

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Roundtable: Personal Health Records
Understanding the Evolving Landscape
December 3, 2010:
Now available without pre-registration!
See post reporting on roundtable on e-Healthcare Marketing.
Morning Session: 8:30 a.m. to 12:15 p.m. (EST)
http://bit.ly/feNIww

Afternoon Session
1:15 p.m. to 5:00 p.m. (EST)
http://bit.ly/gXagf1
Physician at laptop
December 3, 2010   

Please note that due to an overwhelming response to the PHR Roundtable, pre-registration for in-person attendance has reached its capacity. However, you may still participate in the Roundtable via webcast.  See information on webcast below.
Content excerpted from ONC site on 12/2/2010.  

The Office of National Coordinator for Health Information Technology (ONC) will host a free day-long public Roundtable on “Personal Health Records — Understanding the Evolving Landscape.” The Roundtable is designed to inform ONC’s Congressionally mandated report on privacy and security requirements for non-Covered Entities (non-CEs), with a focus on personal health records (PHRs) and related service providers (Section 13424 of the HITECH Act).The Roundtable will include four panels of prominent researchers, legal scholars, and representatives of consumer, patient, and industry organizations. It will address the current state and evolving nature of PHRs and related technologies (including mobile technologies and social networking), consumer and industry expectations and attitudes toward privacy and security practices, and the pros and cons of different approaches to the requirements that should apply to non-CE PHRs and related technologies.

Public comment is open now through Friday, December 10.

WHEN:
Friday, December 3, 2010
WHERE:
(Must have pre-registered to attend in-person.)
FTC Conference Center
601 New Jersey Avenue, NW
Washington, DC 20001
Where to Eat | Where to Stay | Travel DirectionsMEETING MATERIALS:

HOW:
Morning Session
8:30 a.m. to 12:15 p.m. (EST)
http://bit.ly/feNIww 

The PHR Roundtable agenda includes time for public comments from 4:20 to 4:50 p.m. (EST). To provide comments by phone during this time, call toll-free: 1-866-363-9013 and enter the conference ID number: 28762819. An operator will assist you. 

Afternoon Session
1:15 p.m. to 5:00 p.m. (EST)
http://bit.ly/gXagf1 

2010/12/02

ONC’s McKethan Blogs on Beacon Communities, Diabetes and Use of Health IT

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on ONC’s Health IT Buzz Blog and reposted by e-Healthcare Marketing here:

In the month of November, many Beacon Communities across the country are marking American Diabetes Month by continuing to develop new health IT strategies that can help patients and doctors better prevent and manage the disease.

Improving diabetes care using every tool available, including health IT, is as important as ever. Approximately 24 million people in the United States—7.8 percent of the population—have diabetes.  Diabetes is the seventh leading cause of death for Americans and it increases the risk for heart disease, stroke, and a number of other serious health complications.[*]

Recently, the Centers for Disease Control and Prevention (CDC) released a new analysis indicating that the number of adults with type 2 diabetes in the United States is expected to double or triple by 2050.  Right now, one in ten U.S. adults has diabetes. If trends keep heading the way CDC expects, that figure will be one in three adults by 2050.

Health IT will be extremely beneficial for modernizing health care communications between doctors, nurses, and patients, and will disproportionately benefit patients with diabetes.

Diabetics see primary care physicians for overall management of the disease. They see ophthalmologists for necessary eye exams and podiatrists for necessary foot exams – both to avoid costly and invasive complications that can arise without careful management of the disease. Patients with diabetes also frequent pharmacies, see other specialists, and occasionally end up in the hospital.

Taken together, this means that it is as important as ever to ensure that the numerous health care professionals caring for patients living with diabetes have the means to communicate with each other and have the information necessary to ensure appropriate, high quality, and well-coordinated care. For diabetic care, this means monitoring blood sugar levels, lipid levels, kidney-function tests; ensuring that appropriate medications are available; and being aware on a timely basis of diabetes-related hospitalizations that require appropriate follow-up.

To this end, health IT can be extremely useful, and these are precisely the kinds of health IT-enabled innovations that many Beacon Communities are developing right now. For example, the Mississippi Beacon Community will be using health information exchange technologies to inform  providers delivering care to diabetic patients  about other services those same patients have received from other providers in the community (e.g., to make sure eye and foot exams have been received as appropriate); expanding a medication therapy management program to follow up with diabetic patients to ensure that they  understand their medicines; implementing effective strategies for following up with patients when they are discharged from the hospital; and providing shared care managers in physician practices to use clinical decision support systems, disease registries, and other tools to ensure highly coordinated, personalized care for diabetic patients.

In the Beacons for Better Health posting that my colleague Craig Brammer and I wrote for the Health Affairs blog, we included specific examples of how two other Beacons are leveraging health IT in their communities to improve diabetes care.  We will soon share much more information about these and other Beacon Communities, and follow their stories as they learn from their early experiences.

In the meantime, we are interested in hearing about how health IT has helped improve diabetes care in your community. We invite you to comment below and share your story with us.

To locate the Beacon Community nearest you, visit healthit.hhs.gov/Beacon.

SOURCES

CDC, http://www.cdc.gov/chronicdisease/resources/publications/AAG/ddt.htm,

National Diabetes Fact Sheet 2007 (CDC): http://www.cdc.gov/diabetes/pubs/pdf/ndfs_2007.pdf

USA Today: http://www.usatoday.com/yourlife/health/medical/diabetes/2010-10-22-1Adiabetes22_ST_N.htm

*Centers for Disease Control and Prevention. National diabetes fact sheet: general information and national estimates on diabetes in the United States, 2007. Atlanta, GA: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, 2008.

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Please post your comments directly on ONC Health IT Buzz Blog.

Empowering Consumers: ONC Reviews Feedback from Health IT Buzz blog

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Strategy for Empowering Consumers, Round Two – Continuing the Discussion
Friday, November 19th, 2010 
Posted by: Jodi G. Daniel JD MPH Director of the Office of Policy and Planning of Office of National Coordinator (ONC) for Health IT on ONC’s Health IT Buzz blog and reposted here by e-Healthcare Marketing.

Thank you for the thoughtful discussion in response to my blog post “Strategy for Empowering Consumers.” As has consistently been ONC’s experience with the Health IT Buzz Blog, the points made in your responses have both broadened and sharpened our thinking. The blog itself highlights a lesson that has become clear for our communication efforts: we should take greater advantage of social networking tools (and this means much more than blogging) when bringing our policy conversations outside of the walls of HHS.    

I said in the last post that we would do more thinking about consumers as part of our strategic planning process. We had a workshop-style meeting last week at ONC, with both ONC folks and some leading thinkers on this topic from around the country (many of whom have also posted on the blog). At that meeting, we used the blog as a discussion guide while talking through each of the objectives.

Now, we would like to continue the conversation online. First, a recap of what we learned from you. Second, revisions to the goal and objectives based on feedback, this time with strategies included.

Please comment freely.

An aside: We have been reconsidering the label “consumer” and thinking about using “individual” instead. Calling people consumers implies that they are necessarily consuming something, whereas an individual may not need to consume anything (health care or otherwise) to manage his/her health more effectively. What do you think?

GOAL

Previous version: Empower consumers to better manage their health through health IT

What we learned from you: It is not just about changing the behavior of consumers. Health IT offers a tremendous opportunity to change the health care system to become more “consumer-centered.” Yes, consumers should be empowered with health IT to better manage their health; but providers, too, should use health IT to become more collaborative with their patients.

New proposal: Empower consumers with health IT to improve their health and the health care system

Objective A

Previous version: Engage consumers in federal health IT policy and programs

What we learned from you: In order to include consumers in the health IT policymaking process, we cannot expect them to come to Washington or to find this blog online (although the ones that do are amazing!). To truly be representative, we must go to consumers’ conversations. These conversations are already taking place, whether it is in online forums serving specific demographics, community-based faith groups, or disease advocacy groups. Our job should be to seek out the existing conversations and participate in them, both to solicit input into our policies and programs, and to communicate our health IT messages to consumers.

New proposal: Engage consumers with health IT

Objective B

Previous version: Accelerate consumer access to electronic health information

What we learned from you: Getting consumers access to their health information is the government’s primary lever in encouraging consumer use of health IT, innovation in the industry, and consumer-centered approaches to care. The meaningful use requirements are a great opportunity to change the incentive structure and make information sharing attractive for providers. Meaningful use requirements, however, need to be complemented by other policies related to consumer information access, such as privacy and security policies (e.g., identification assurance policies). There was also general support for the Blue Button Initiative – a way the government, through the Veterans Health Administration and the Centers for Medicare & Medicaid Services, is providing consumers with access to their information – as a starting point.

New proposal: Accelerate consumers’ and caregivers’ access to their electronic health information in a format they can use and reuse

Objective C

Previous version: Foster innovation in consumer health IT

What we learned from you: Data liquidity, including consumer access to their health information, is the first step to fostering innovation. Innovation is not just about technology; there is also a real need for innovation on implementation, replicating successes, and using data in advanced ways. But it is the industry that will be leading any such innovation, not the government. Besides liberating data, the government should provide clear regulatory direction and focus promotion activities on specific innovation hurdles.

New proposal: Encourage innovation in the capture and usefulness of consumer health information

Objective D

Previous version: Drive consumer-provider electronic communications

What we learned from you: There are a number of established and emerging technologies that take health care beyond the walls of the provider setting. Along with the information access made possible by EHRs, these technologies have real potential for making health care more consumer-centered. In future stages of meaningful use and other efforts that are part of health care reform, the government should be taking advantage of these technologies and the ways they can change patient-provider interactions for the better.

New proposal: Integrate consumer health information and consumer health IT with clinical applications to support consumer-centered care

The overall structure would now look like this:

Goal: Empower consumers with health IT to improve their health and the health care system

  • Objective A: Engage consumers with health IT
    • Strategy A.1: Listen to consumers and implement health IT policies and programs to meet their interests
    • Strategy A.2: Communicate with consumers openly and take advantage of existing communication networks to reach people where they are

     

  • Objective B: Accelerate consumers’ and caregivers’ access to their electronic health information in a format they can use and reuse
    • Strategy B.1: Through meaningful use incentive payments, encourage providers to give consumers access to their health information in an electronic format
    • Strategy B.2: Act as a model for sharing information with consumers and make available tools to do so
    • Strategy B.3: Establish policies that foster consumer and caregiver access to their health information while protecting privacy and security

     

  • Objective C: Encourage innovation in the capture and usefulness of consumer health information
    • Strategy C.1: Liberate health data that will enable consumer health IT innovation
    • Strategy C.2: Make targeted investments in consumer health IT research
    • Strategy C.3: Employ government programs and services as test beds for innovative consumer health IT
    • Strategy C.4: Monitor and promote industry innovation
    • Strategy C.5: Provide clear direction to the consumer health IT industry on the government’s role and policies in protecting consumers

     

  • Objective D: Integrate consumer health information and consumer health IT with clinical applications to support consumer-centered care
    • Strategy D.1: Establish meaningful use requirements and other government mechanisms that encourage use of consumer health IT to move toward consumer-centered care
    • Strategy D.2: Support the development of standards and tools that make EHR technology capable of interacting with consumer health IT, and build requirements into EHR certification
    • Strategy D.3: Identify effective uses of consumer health IT that support consumer-centered care, and develop process changes and payment models that encourage their adoption
 

ONC Seeks Public Comments on PHRs by Dec 10 Re: Security & Privacy

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Office of the National Coordinator (ONC) for Health IT:
Public Comments Sought on Personal Health Records
by Dec 10, 2010
Emailed by ONC on Nov 1, 2010

In conjunction with ONC’s upcoming PHR Roundtable, ONC is seeking public comments on issues related to personal health records. The public comment period is open now through December 10. ONC would like the public’s input on the following topics:

  • Privacy and Security and Emerging Technologies
  • Consumer Expectations about Collection and Use of Health Information
  • Privacy and Security Requirements for Non-Covered Entities

Visit the ONC website to submit your comment by December 10:
http://healthit.hhs.gov/blog/phr-roundtable/?page_id=18.
This link goes to an ONC page with the content that’s posted below.

ONC Seeks Public Comments on PHRs
Excerpted from ONC site on 11/1/2010.

[Click here for ONC Public Comments Page on PHRs]
The Office of the National Coordinator for Health Information Technology is seeking public comments on issues related to personal health records. Please submit comments by visiting one or more of the following questions. Please note that your name and comment will be placed on the public record of this roundtable, including on the publicly accessible HHS/ONC website (links below).

Thank you for your submission. (Note: The links below will take you directly to the ONC blog pages for posting.) 1. Privacy and Security and Emerging Technologies
What privacy and security risks, concerns, and benefits arise from the current state and emerging business models of PHRs and related emerging technologies built around the collection and use of consumer health information, including mobile technologies and social networking?

2. Consumer Expectations about Collection and Use of Health Information
Are there commonly understood or recognized consumer expectations and attitudes about the collection and use of their health information when they participate in PHRs and related technologies? Is there empirical data that allows us reliably to measure any such consumer expectations?  What, if any, legal protections do consumers expect apply to their personal health information when they conduct online searches, respond to surveys or quizzes, seek medical advice online, participate in chat groups or health networks, or otherwise? How determinative should consumer expectations be in developing policies about privacy and security?

3. Privacy and Security Requirements for Non-Covered Entities
What are the pros and cons of applying different privacy and security requirements to non-covered entities, including PHRs, mobile technologies, and social networking?

4. Any Other Comments on PHRs and Non-Covered Entities
Do you have other comments or concerns regarding PHRs and other non-covered entities?

Event Details | Register for the Event by Webinar
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See previous e-Healthcare Marketing post for Event Details. In-person participation is now closed due to capacity, but registration for the Webinar is available.

Strategy for Empowering Consumers with Health IT: ONC Wants Your Feedback

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Strategy for Empowering Consumers
Monday, November 1st, 2010 | Posted by: Jodi G. Daniel JD MPH, Director of the Office of Policy and Planning, Office of National Coordinatator for Health IT and reposted here by e-Healthcare Marketing. 

For the past few months, ONC has been reviewing the government’s role in empowering consumers to better manage their health through information technology (IT). As we work toward a future of widespread electronic health record adoption and meaningful use, and as we continue to see rapid technology advancements in this industry, there is opportunity for consumers to take fuller advantage of the benefits of health IT.

Last week, we hosted a meeting with representatives from some of the leading consumer advocacy organizations in the country, including consumer protection agencies, disease advocacy groups, clinical innovation think tanks, and consumer health web designers. This particular meeting was focused on building a dialogue between the government, consumer organizations, and their members about the nation’s transition to electronic health records.  It further validated our belief that public input is critical to the process of focusing our work on areas where the federal government has an important role to play, and away from areas best left to others.

ONC is currently drafting a five-year Federal Health IT Strategic Plan, which is scheduled for publication in early 2011. In the plan, our proposed framework for consumer empowerment takes into consideration our existing activities. But it also provides a unique opportunity to set forward-looking direction and do more for consumers over the next five years. We hope you will assist us.

  • First, do you agree with the four objectives listed below?
  • Second, what specific activities would you like to see the federal government take on? See the bullet points below each objective for some starting ideas of possible activities.   

We will be unable to respond to every post but we will follow-up with another entry to reflect on the discussion.


The Goal: Empower Consumers to Better Manage Their Health through Health IT

  • Objective A. Engage consumers in federal health IT policy and programs: In order for federal health IT policy and programs to be successful, consumers must both understand the impact of those policies and programs and have direct involvement in shaping them. Ideas for possible activities:
    • Fund a communication campaign to engage with consumers about the benefits of health IT
    • Host consumer listening sessions designed to get consumers’ input on programs and policies
    • Solicit consumer input to Federal Advisory Committees and into rulemaking processes
  • Objective B. Accelerate consumer access to electronic health information: Consumers will be better able to manage their health when they have timely and electronic access to their own health information. Ideas for possible activities:
    • Develop tools like the “Blue Button,” an application that enables veterans to download their health information online from My HealtheVet
    • Require electronic access of consumer health information by patients and address privacy protections for this information through federal regulations and policies
    • Create meaningful use incentives for physicians to share health information with patients
  • Objective C. Foster innovation in consumer health IT: Innovative tools will make electronic health information more useful to consumers and make managing their healthcare more convenient. Ideas for possible activities:
    • Fund research into innovative technologies
    • Launch pilots (such as the Beacon Community Program) that show ways to improve outcomes through the use of consumer health IT
    • Set up “technology test beds” that could define needs for new technologies in the clinical setting
  • Objective D. Drive consumer-provider electronic communications: Consumers can become more active participants in their health and care if providers encourage electronic communications and tools, such as secure e-mail and remote monitoring. Idea for possible activity:
    • Develop quality improvement initiatives that encourage providers to help empower consumers through their use of health IT

Please post your comments directly on ONC Health IT Buzz blog.

Registration Open for PHR Roundtable by ONC: Dec 3, 2010 in Washington, DC

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Registration Open for Personal Health Records Roundtable: Dec 3, 2010   

Register for the Event 

Online registration is now open for the Roundtable on “Personal Health Records – Understanding the Evolving Landscape.” This free day-long public Roundtable, hosted by the Office of the National Coordinator for Health Information Technology (ONC), will be held on Friday, December 3 at the FTC Conference Center in Washington D.C. Register to attend in person or via webcast by visiting http://healthit.hhs.gov/PHRroundtable.

Personal Health Records — Understanding the Evolving Landscape
When:
Friday, December 3, 2010; 8:30 a.m. to 4:30 p.m.
(registration check-in opens at 7:30 a.m.)Where:
FTC Conference Center
601 New Jersey Avenue, NW, Washington, DC 20001
or via webcastRegister at http://healthit.hhs.gov/blog/phr-roundtable . 

For agenda and details of the panels, see previous post on e-Healthcare Marketing.

Blumenthal Blogs on Health IT-based Patient Safety and Commissioned IOM report

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Returning to the Source to Help Achieve Patient Safety Goals
Thursday, October 7th, 2010 | Posted by: Dr. David Blumenthal originally on ONC’s Health IT Buzz Blog and republished here by e-Healthcare Marketing blog.

Two landmark reports by the Institute of Medicine (IOM) changed Americans’ perception of their health care system and launched today’s drive to improve the quality and safety of medical care in America. The reports were To Err Is Human, published in 1999, and Crossing the Quality Chasm, released in 2001. 

Both these reports highlighted the important potential role that health information technology (HIT) could play in improving health care quality and reducing medical errors. In fact, Recommendation #9 in Crossing the Quality Chasm called for “renewed national commitment to building an information infrastructure” and said: “This commitment should lead to the elimination of most handwritten clinical data by the end of the decade.”

The end of that decade is now just three months away, and not to mince words, we’re behind the ambitious schedule that the IOM report envisioned. Nonetheless, we have at last made the substantial commitment that was called for in the report.  

Last year in the HITECH Act, Congress and the President authorized $27 billion in Medicare and Medicaid incentive payments for providers who adopt and make meaningful use of certified electronic health records (EHRs). At the same time, the Act created $2 billion in new programs to support the transition to HIT-assisted care. And this summer, the regulatory framework was completed for Stage 1 of the Meaningful Use path toward an EHR-based future in health care.

With the engines of change now in place, it is time to bring closer focus to other key issues for achieving the full potential benefits of HIT. One of these is the issue of improving patient safety. 

We know, both in theory and practice, that HIT-assisted care can reduce errors and improve patient safety. In particular:  

  • Reliable access to complete personal health information is the foundation of safe and effective care. EHRs are inherently superior to paper in delivering such access.    
  • Even more uniquely, EHRs can use their computing power to automatically cross-check personal information and other sources. With such backup, clinicians can be automatically alerted when drugs or other treatments may be contraindicated because of allergies, potential drug interactions, or other factors.

At the same time, however, it would be naïve to suppose that HIT-assisted care can deliver its full patient safety benefits in a single stroke – or that HIT will not present its own safety issues. Clinicians need to become familiar with new EHR systems, which will take time. EHR systems themselves need to evolve and improve. We need to ensure that the “decision support” information they provide is accurate and personalized. Their interfaces need to grow in user-friendliness. Even safety alerts need to find the right medium and avoid producing “alert fatigue.”

These challenges can be met – and indeed, the very “fix-ability” of HIT-based care can be one of its primary safety benefits. HIT systems tend to record and expose patient safety problems when they occur, while paper-based care too often hides them. And EHRs are amendable to rapid, systemic correction of problems – while corrections in a non-systemic, paper-based clinic can take years to accomplish, even when they are identified.

How can we maximize patient safety through HIT-based care? What roles and actions by government, the private sector, and health care providers themselves can help achieve the full potential benefits that were sought in those seminal IOM reports?

As we address these questions, there is no better source of guidance than the IOM itself, building on the same expertise and convening power that produced its initial reports 10 years ago. For that reason, the Office of the National Coordinator for Health Information Technology has contracted with IOM for a follow-up one-year study. In this study, IOM will:  

  • Identify approaches to promote the safety-enhancing features of HIT while protecting patients from any safety problems associated with HIT and preventing HIT-related patient safety problems before they occur;
  • Identify approaches for surveillance and reporting activities to bring about rapid detection and correction of patient safety problems;
  • Address the potential roles of private sector entities such as accrediting and certification bodies as well as patient safety organizations and professional and trade associations; and
  • Examine existing authorities and potential roles for key federal agencies, including the Food and Drug Administration, the Agency for Healthcare Research and Quality, and the Centers for Medicare & Medicaid Services.

As this study is carried out, we will move where appropriate to improve surveillance, reporting, product safety, and clinician performance. But at the same time, we will anticipate a “deep dive” in knowledge synthesizing and a new round of productive recommendations from the IOM.

There is every reason to believe that HIT-assisted care will be transformative for American medicine, but no reason to think the change will be easy or instantaneous. We are returning to the IOM as a key partner in helping to refine the course that it first helped to chart a decade ago.
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To post comments, please go to ONC’s Health IT Buzz blog.

IOM: Study to Improve Health Care Safety with Health IT

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Institute of Medicine will study best policies and practices for improving health care safety with health information technology
HHS Press Release on Wednesday, September 29, 2010                         

The Institute of Medicine (IOM) will conduct a 1-year study aimed at ensuring that health information technology (HIT) will achieve its full potential for improving patient safety in health care.  The study will be carried out under a $989,000 contract announced today by the Office of the National Coordinator for Health Information Technology (ONC), which is charged with coordinating federal efforts regarding HIT adoption and meaningful use.

“Since 1999, when the IOM published its ground-breaking study To Err Is Human, the Institute has been a leader in the movement to improve patient safety,” said David Blumenthal, M.D., national coordinator for health information technology.  “This study will draw on IOM’s depth of knowledge in this area to help all of us ensure that HIT reaches the goals we are seeking for patient safety improvement.”

The study will examine a comprehensive range of patient safety-related issues, including prevention of HIT-related errors and rapid reporting of any HIT-related patient safety issues.  It will make recommendations concerning the potential effects of government policies and private sector actions in maximizing patient safety and avoiding medical errors through HIT.  Highlights of the study will include: 

* Summary of existing knowledge of the effects of HIT on patient safety;

* Identifying approaches to promote the safety-enhancing features of HIT while protecting patients from any safety problems associated with HIT;

* Identifying approaches for preventing HIT-related patient safety problems before they occur;

* Identifying approaches for surveillance and reporting activities to bring about rapid detection and correction of patient safety problems;

* Addressing the potential roles of private sector entities such as accrediting and certification bodies as well as patient safety organizations and professional and trade associations; and

* Discussion of existing authorities and potential roles for key federal agencies, including the Food and Drug Administration (FDA), the Agency for Healthcare Research and Quality (AHRQ), and the Centers for Medicare & Medicaid Services (CMS). 

“The IOM is pleased to have the opportunity to add its expertise and convening power in helping to achieve the goals of improved safety through HIT-assisted care,” said IOM President Harvey Fineberg, M.D. 

Donald Berwick, M.D., CMS administrator and a national leader on patient safety, said, “Improving patient safety in health care depends on thoroughness in planning and execution, to find problems systematically and correct them decisively.  We have high expectations for patient safety improvement through HIT, but achieving those goals will require the same careful and vigorous approach that is needed to improve safety in any enterprise.  The IOM can help us identify a productive path to better patient safety with the help of HIT.” 

Substantial funding under the Health Information Technology Economic and Clinical Health Act, part of the American Recovery and Reinvestment Act of 2009, will support the adoption and meaningful use of HIT, especially through incentives for the adoption and meaningful use of certified electronic health records. In July, CMS announced regulations outlining the initial requirements that eligible health care providers must meet to demonstrate meaningful use of certified EHR technology for the Medicare and Medicaid incentive payments program, which CMS will administer.  Also in July, ONC announced regulations completing the adoption of an initial set of standards, implementation specifications and certification criteria to enable the testing and certification of EHR technology for meaningful use Stage 1.  Earlier this month, ONC named initial testing and certifying bodies. 

More information about HIT and support for adoption and meaningful use can be found on the web at www.healthit.hhs.gov.

Push Blue Button for Personal Health Information: Markle Foundation

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Health IT Investments Should Enable People to Download Their Own Information …at the click of a blue button
Press Release from Markle Foundation on August 31, 2010
PDF Version

Blue Button

Blue Button

Markle Connecting for Health Collaboration Agrees on ‘How To’ Policies

Veterans, Medicare beneficiaries near ‘blue button’ access

Markle collaboration includes support from 48 organizations; recommends specific privacy practices

NEW YORK (Aug. 31, 2010)
Representing a wide array of providers, consumers, technology companies, insurers, and privacy advocates—48 organizations today declared their support for a specific set of privacy and security practices for the “blue button.”

The public-private collaborative group envisions the blue button as a common offering among secure websites for patients and beneficiaries by medical practices, hospitals, insurers, pharmacies, laboratories, and information services.

“By clicking the blue button, you could get your own health information electronically—things like summaries of doctor visits, medications you are currently taking, or test results. Being able to have your own electronic copies and share them as you need to with your doctors is a first step in truly enabling people to engage in their health care,” said Carol Diamond, MD, MPH, managing director at Markle.

“This capability is not common today, but we have the opportunity to make it a basic expectation—especially now that billions of public dollars will be flowing to help subsidize health information technology,” Diamond said.

The paper is being released as Medicare and the U.S. Veterans Administration (VA) prepare to implement a blue button this fall that will, for the first time, allow beneficiaries to electronically download their claims or medical information in a common format from the My Medicare.gov and My HealtheVet secure websites.

President Obama announced the blue button for veterans in an August 3 address. “For the first time ever, veterans will be able to go to the VA website, click a simple blue button and download or print your personal health records so you have them when you need them, and can share them with your doctors outside of the VA,” the President said.

The Markle collaboration’s recommendations are timely because the American Recovery and Reinvestment Act requires that individuals be able to receive electronic copies of their records from providers’ electronic health record systems. In addition, new federal economic stimulus rules require health care providers and hospitals to deliver electronic copies of things like lists of medications, after-visit summaries, and lab results if they choose to participate in federal subsidies for using health information technology.

The Markle policy recommendations reflect consensus on one means by which this can be accomplished today, securely and efficiently. The group details privacy policies and practices for implementing the download capability with sound authentication and security safeguards and suggests practices to help individuals make informed choices about downloading their information. For example, it recommends specific language to remind individuals not to download or store their personal health information on shared computers.

Christine Bechtel, vice president of the National Partnership for Women & Families, and a member of the federal Health IT Policy Committee, supported the Markle policy paper.

“People see a lot of different health care providers over time, so giving them a convenient option to securely assemble their health information from multiple sources will help them better manage and coordinate their own care,” Bechtel said. “This capability is one of the simplest and most direct ways of helping patients and families see the benefits of the federal health IT investments that they, as taxpayers, have helped fund.”

The proposed privacy policies build on the Markle Common Framework for Networked Personal Health Information, a set of recommended practices for individual access to information and privacy. The framework, first released in 2006, is widely supported by a range of technology companies, insurers, provider groups, and consumer and privacy advocates.

“We recommend specific privacy policies to help individuals make informed choices about downloading their personal health information, and to emphasize sound authentication and security practices,” said Josh Lemieux, director of personal health technology at Markle. “By supporting this set of policies, a wide range of leaders commit to practices that encourage individual access to information in a way that respects privacy and security.”

The following organizations declared their support for the policy paper,

—The simple, but rarely offered, ability for people to download their health records should be a priority in the nationwide push to upgrade health information technology, according to a policy paper released today by the Markle Foundation. Markle Connecting for Health Policies in Practice: The Download Capability:

AARP • Allscripts Healthcare Solutions • American Academy of Family Physicians • American College of Cardiology • American College of Emergency Physicians • American Medical Association • Anakam Inc. • Axolotl • BlueCross BlueShield Association • Center for Connected Health • The Children’s Partnership • Center for Democracy and Technology • Center for Medical Consumers • Children’s Health Fund • Chilmark Research • Computer Sciences Corporation • Consumers Union • Dossia

Consortium • DrFirst • Google • Initiate, an IBM Company • The Institute for Family Health • Intel Corporation • Intuit Health • Keas, Inc. • LifeMasters-StayWell Health Management • Markle Foundation • McKesson Technology Solutions/RelayHealth • MedCommons • Medical Group Management Association • MedicAlert Foundation • Meditech • Microsoft Corporation • National Coalition for Cancer Survivorship • National Committee for Quality Assurance • National Partnership for Women & Families • National Quality Forum • NaviNet • Pacific Business Group on Health • PatientsLikeMe • Prematics, Inc. • Press Ganey • PricewaterhouseCoopers LLP • RTI International • Vanderbilt Center for Better Health • Visiting Nurse Service of New York • Wal-Mart Stores, Inc. • Wellport

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Markle Foundation works to improve health and national security through the use of information and technology. Markle collaborates with innovators and thought leaders from the public and private sectors whose expertise lies in the areas of information technology, privacy, civil liberties, health, and national security. Learn more about Markle at www.markle.org .

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Markle Connecting for Health is a public-private collaborative with representatives from more than one hundred organizations across the spectrum of health care and information technology specialists. Its purpose is to catalyze the widespread changes necessary to realize the full benefits of health information technology while protecting patient privacy and the security of personal health information. Markle Connecting for Health tackles the key challenges to creating a networked health information environment that enables secure and private information sharing when and where it is needed to improve health and health care. Learn more about Markle Connecting for Health at www.connectingforhealth.org .
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KEY LINKS
President Obama Talks about the Blue Button Initiative (VIDEO)

See Department of Veteran Affairs for Blue Button Initiative.

See Centers for Medicare and Medicaid Services about Blue Button Initiative.