Category Archives: Patients

Boston Health IT/HIE Conferences meets goals center stage and off stage

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Blumenthal, governor put health IT center stage in Boston;
Off stage state HIE, Medicaid and other officials network
Guided by the deft hand of Massacussetts Secretary of Health and Human  Services JudyAnn Bigby through a series

Blumenthal: Live, Projected, Streaming

Blumenthal: Live, Projected, Streaming

 of scheduling shifts, the Boston-based national conference on Health IT with 600 participants from 30 states on April 29-30, 2010, included inspirational keynotes from National Coordinator for Health IT David Blumenthal and Surgeon General Regina Benjamin, as well as an enthusiastic welcome from host Governor Deval Patrick who moderated a panel as well.

Off stage state HIE and Medicaid directors and leaders took the opportunity to network and compare notes, as well as take advantage of the smaller workshops where session leaders focused on encouraging discussion and bringing up issues that needed to be addressed in the accelerating Health IT federal-state initiative.

Bernie Monegain reported for Healthcare IT on April 30, 2010, “The government will announce ‘soon – it should be very, very soon’ which 15 communities of the 130 that applied will be awarded Beacon Community grants, National Coordinator for Health IT David Blumenthal, MD, said.” In addition to supporting improved electronic health record implementation and information exchange in communities that have already demonstrated great strengths in those capabilities, these Beacon communities will share lessons learned and best practices in achieving measurable outcomes in  health care quality, safety, efficiency, and population health with communities across the country, according to the Office of the National Coordinator site. 

CMIO.net story by  Jeff Byers  on April 29, 2010 was headlined “CMIO Blumenthal gets personal, calls for teamwork among health IT pros.” Seeing younger colleagues using electronic health records, Blumenthal noted, per Byers reporting, “I was not going to be the only one in my physician group of ten not using it.”  Blumenthal’s message is increasingly appealing to physicians’ sense of professionalism and focus on delivering the best patient care.

Byers futher reported April 29, 2010 in CMIO.net on a discussion of the role of consumers and patients in Health IT by a  ”Panel: How do HIEs, EMRs affect patient-physician experience?,” and provides the viewpoint of each of the panelists. 

ComputerWorld’s article by Lucas Mearian on April 30, 2010 reported “Health IT funding to create 50,000 jobs; Sixty regional IT help centers will help health care facilities implement electronic medical records.”

In addition to regional collaboration meetings among state officials grouped according to CMS regions, Workshops included “Achieving Sustainable Success,” Making a Difference–Health IT and Clinical Quality Improvement,” “State Initiatives in Healthcare Reform,” “Successful HIEs–How They Did It and How Ii Helps,” “Jobs, Jobs, Jobs–Health IT and State Economic Development Policy,” Creating Effective Public/Private Partnerships,” “EHR Early Adopters–How They Did It and How It Helps,” and “Health IT, HIE, and Public Health.”

One key panel, providing a sweeping overview of Health IT policies and standards, was moderated by Internet publisher pioneer Tim O’Reilly of O”Reilly Communications.

State HIE Directors are reportedly meeting with the ONC next week, and this conference acted as a bit of a warmup, with relatively new officials getting to connect, and others catch up.

See previous post on conference on e-Healthcare Marketing.

NOTE: As Jackie Slivko pointed out on LinkedIn on May 3, 2010, “Local and regional healthcare leaders as well as key vendors were also present and had an unprecedented opportunity to connect, learn from each other and network. Kudos to Mass Health Data Consortium http://www.mahealthdata.org/ , and the eHealth Initiative at the Mass Technology Collaborative http://www.maehi.org/ , both of whom continue to provide related forums and seminars. For live video and more from the conference, see http://mahit.us/ .”

Mass Gov Hosting Nat’l Conference On Health IT April 29-30: Boston

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Health IT: Creating Jobs, Reducing Costs and Improving Quality
A National Conference Hosted by Gov. Deval Patrick

According to Massachusetts Health Data Consortium, who’s supporting the conference, streaming video will be shown for parts of the conference on April 29 and 30:
Conference Blog with Video: http://mahit.us
http://www.livestream.com/publicintellect

Agenda
1:30  Welcome by Deval L. Patrick, Governor of Massachusetts
Thomas M. Menino, Mayor of Boston
Intro by Mitchell Adams, Exec Direc, Mass Technology Collaborative
Keynote Schedule revised; started with David Blumenthal
2:00 Keynote by David Blumenthal, MD, MPP
Nat’l Coordinator for Health IT
The State and National Vision for Health IT and HIE
Intro by JudyAnn Bigby, MD, Sec’y Mass Exec Office of HHS
3:00 Consumer-Centric: The Role of the Patient in Health IT and HIE
John Moore, Managing Director, Chilmark Research
Daniel Nigrin, MD, CIO, Children’s Hospital of Boston
Barbra Rabson, Exec Dir, Mass Health Quality Partners
David Szabo, Partner, Edwards, Angell Palmer & Dodge
Moderator: Paula Griswold, Exec Dir, Mass Coalition  for the   Prevention of Medical Errors.
This is a deep-dive into real vision of consumer/patient-centric healthcare. Challenges and opportunities, privacy and security challenges, patient control of PHI.
4:15 Regional Collaboration Meetings
State Officials in attendance, and others who wish to observe, will meet in breakout rooms, with states grouped by the 10 CMS regions.

Conference Blog with Video: http://mahit.us/
Agenda
Follow conference on Twitter:
http://twitter.com/#search?q=%23mahit

Patient-centered approach to Health IT Safety

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Patient-centered approach to Health IT Safety
Recommendations of Adoption Certification Workgroup
Here’s the text of a draft recommendation to be presented and discussed at the Health IT Policy Committee on April 21, 2010.
Meeting materials on ONC site

DRAFT DOCUMENT –
SUBJECT TO HEALTH IT POLICY COMMITTEE REVIEW AND APPROVAL –
PDF VERSION

April 21, 2010

Dear Dr. Blumenthal:

The HIT Policy Committee (Committee) gave the following broad charge to the Adoption-Certification Workgroup:

Broad Charge to the Workgroup: To make recommendations to the HIT Policy Committee on issues related to the certification and adoption of a certified EHR for every American by 2014, including issues related to workforce, training, etc.

This letter provides recommendations to the Department of Health and Human Services (HHS) on the topic of patient safety.

BACKGROUND AND DISCUSSION

On February 25, 2010, the Adoption-Certification Workgroup (Workgroup) held a hearing on the topic of patient safety related to the use of electronic health records. A summary of the hearing is attached. After the hearing was held, the Workgroup conducted several public phone conference calls during which possible approaches to this vitally important topic were discussed. Preliminary findings were discussed with the HIT Policy Committee during its meeting on March 19, 2010. Based upon the feedback that we received during these meetings and from the public, we are making the following patient safety recommendations, based upon the following goal:

Establish a patient-centered approach to HIT safety that is consistent with the National Coordinator’s vision of a learning health and healthcare system. To achieve this goal, a culture of improvement needs to be created by each healthcare entity.

HIT POLICY COMMITTEE RECOMMENDATIONS AND COMMENTS: NATIONAL OVERSIGHT PROCESS AND INFORMATION SYSTEMS

In order to create the conditions that enhance the ability to prevent unsafe conditions that could lead to injuries, information is needed on hazards and “near-misses.”

In order to create the conditions that enhance the ability to prevent unsafe conditions that could lead to injuries, information is needed on hazards and “near-misses.”

Recommendation 1.0 – A national, transparent oversight process and information system is proposed, similar to a Patient Safety Organization (PSO), with the following components:

  Confidential reporting with liability protection (e.g.,. whistle-blower protection, confidential disclosure of adverse events)

  Ability to investigate serious incidents

  Provision of standardized data reporting formats that facilitate analysis and evaluation

  Receive reports from patients, clinicians, vendors, and healthcare organizations

  A reporting process to cover multiple factors including usability, processes, and training

  Receive reports about all health information technology (HIT) systems

  Receive reports from all Software Sources (e.g., vendors, self-developed, and open source)

  Ability to disseminate information about reported hazards

While this recommendation appears to be necessary, it might not represent a complete response to all HIT patient safety concerns. Additional research is needed.

Recommendation 1.1 - We recommend that the Office of the National Coordinator (ONC) commission a formal study to thoroughly evaluate HIT patient safety concerns, and to recommend additional actions and strategies to address those concerns.

FACILITATE AND ENCOURAGE REPORTING

We learned that most unsafe conditions are not the result of a single software error. Instead, multiple factors are involved, including challenges with usability, processes, and interoperability. Healthcare organizations and clinicians represent a primary source of information about unsafe conditions. In order to encourage healthcare organizations and clinicians to report unsafe conditions, we make the following recommendations.

Recommendation 2.0 – Stage 2 of Meaningful Use should include a requirement that EPs and hospitals report HIT-related patient safety issues to an organization authorized by ONC to receive HIT-related safety reports (“HIT safety organization”). Copies of those reports should be sent to any vendors that might be involved.

Recommendation 2.1 – Certification criteria for EHRs should include functionality that makes it easier for clinician-users to immediately report any problems/concerns with information that appears on screens (a “feedback button”) to appropriate staff who can either make modifications themselves or escalate the problem to those who can. This feedback button could also be used by clinician-users to request corrections to data.

Recommendation 2.2 – The Regional Extension Centers should provide HIT-related patient safety reporting training.

VENDOR PATIENT SAFETY ALERTS

The certification process can be used to ensure that vendors provide safety alerts to their customers, and it can also be used to improve patient safety.

Recommendation 3.0 – We recommend that the Stage 2 EHR certification criteria should include requirements that vendors maintain records on all patient safety concerns reported by their customers, and that vendors have established processes to promptly provide all impacted customers with safety alerts.

PATIENT ENGAGEMENT

Patient Engagement plays a major role in identifying errors and preventing problems. For example, in ambulatory settings, in nearly every encounter when it is possible for patients to observe and discuss information as it is entered during the health care encounter, potential errors can be avoided. Through a personal health record (PHR) or patient portal, patients obtain the ability to review some of the data in their EHR, and, as a result, PHRs and/or patient portals should continue to be encouraged. Access by family members to inpatient medication lists should also be encouraged (assuming appropriate authorization from the patient). Mechanisms that make it easier for patients to report inaccurate or questionable data need to be encouraged as ―best practices.‖ Examples include (a) the use of a ―feedback button‖ that makes it easy for a patient to communicate with and receive feedback about system problems, and (b) a secure communication link, perhaps through a PHR, that permits patients to link back to the provider to report data corrections and omissions.

IMPLEMENTATION, EDUCATION, AND TRAINING

The implementation, education, and training processes can impact patient safety conditions. Training programs should include information about the value of reporting patient safety incidents and unsafe conditions in the context of broader educational efforts to create and continuously enhance cultures of patient safety.

INTEROPERABILITY

Interoperability problems are a significant source of patient safety concerns. As a result, ONC’s interoperability efforts continue to be extremely important

Recommendation 4.0 – The HIT Standards Committee should consider the concept of “traceability” of interface transactions. “Traceability” refers to the ability to trace and analyze the source of problems. The HIT Standards Committee is asked to consider techniques like requiring the use of audit trails or “logs” of interface transactions.

BEST SAFETY PRACTICES

Recommendation 5.0 - We recommend that ONC work with the Regional Extension Centers (RECs) and with organizations such as the American Medical Informatics Association (AMIA) to create a set of best safety practices for selecting, installing, using, and maintaining HIT, and disseminate those best practices to providers. Tools, such as Geisinger/Jim Walker’s Hazard Evaluation tool and Dave Classen’s flight simulator should be explored as possible resources for providers.

ACCREDITATION

Accreditation organizations such as The Joint Commission can play an important role in assuring HIT patient safety.

Recommendation 6.0 – ONC should discuss HIT patient safety concepts with these organizations to determine, for example, if they are examining whether large institutions have a patient safety review committee, and whether processes are in place that encourage reporting of problems.

TIMING OF STAGE 2 AND STAGE 3
The time period between the publication of certification criteria and the beginning of the eligibility period is a safety concern for both of the next two stages. Any software changes or updates must be carefully tested by each healthcare organization that receives those updates.

Recommendation 7.0 – We recommend that, for each stage, certification criteria should be finalized at least 18 months prior to the beginning of the eligibility period.

With this proposed schedule, a vendor could have 12 months to develop, test, certify, and distribute their software, and then customers could have 6 months to test, train and implement changes prior to the beginning of the eligibility period. For example, this schedule would require that Stage 2 certification criteria be finalized by April 1, 2011, which would allow vendors to complete their programming, testing, certification, and distribution work by April 1, 2012, and existing customers to train, test and implement by October 1, 2012. For vendors with a large number of customers, the six month window is probably difficult, and an even longer period might be requested. In this example, in order to finalize the certification criteria for Stage 2 by April 1, 2011, the initial publication needs to occur by December 31, 2010.

FOOD AND DRUG ADMINISTRATION
A number of concerns were expressed about the potential for increased Food and Drug Administration (FDA) regulation of EHR systems. These concerns include:

a. The FDA focuses on problems caused by individual ―devices.‖ As a result, it does not seem to cover situations where problems occur even though the software is operating correctly. This is only one example of a situation that arises because HIT is embedded in a sociotechnical system that includes a complex mix of people, technology, work processes, and factors outside the organization that influence it.

b. The FDA reporting system focuses on serious injuries and death caused by individual devices. That reporting process might not cover many unsafe conditions and hazards, such as incompatible work-processes in which no actual injuries occur, that might be another result of sociotechnical factors beyond the technology.

c. The FDA’s Quality Systems Regulation (QSR) process is inconsistent with the incremental nature of HIT development, and, as a result, could harm innovation and increase vendor and product costs. By hampering and slowing the ability of vendors to continuously improve systems, thus making them safer, such a process could actually work against the safety efforts we are proposing.

d. The increased costs of FDA class II regulation could become a barrier to entry for small vendors.

While we have concerns, we have also seen that the FDA has valuable experience that could help the ONC accomplish its goals. Two possible ways that the ONC and the FDA could collaborate are:

1. Collaborate on certification criteria that improve patient safety.

2. Focus on selected HIT areas that are creating safety risks for EHR implementations. For example, retail pharmacies create safety problems because they do not process electronic order cancellations, which can result in over-medication of patients. Additionally, most retail pharmacies are not providing compliance data. The FDA could be a valuable ally to address this type of patient safety issue with non-certified software systems that connect to the EMR.

Recommendation 8.0 – We recommend that the ONC work with the FDA and representatives of patient, clinician, vendor, and healthcare organizations to determine the role that the FDA should play to improve the safe use of Certified EHR Technology.

FINAL OBSERVATION
The workgroup did not hear any testimony that indicated that EHR systems and CPOE systems should not be implemented. We detected, however, frustration that these systems are not reaching their full potential. We also clearly heard concerns that these systems need to be properly and safely implemented. In the public comments, we were also reminded of the 1999 Institute of Medicine report, which indicated that over 90,000 lives could be saved each year through computerized ordering. As a result, we believe that the biggest risk to patient safety would be to either avoid or delay the proper implementation of EHR and CPOE systems.

Recommendation 9.0 – We recommend that ONC continue its efforts to encourage implementation of EHR systems.

Sincerely yours,
Paul Egerman  and Marc Probst
Co-Chairs  
Adoption Certification Workgroup

Patient/Consumer Engagement in Meaningful Use: Apr 20 Hearing

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Patient/Consumer Engagement in Meaningful Use:
April 20, 2010 Hearing; Access via Web, Phone, or iPhone 
Meaningful Use Workgroup, HIT Policy Committee
Available Testimony Added
Washington, DC
Tuesday, April 20, 2010, 9 a.m. to 3:30 p.m./Eastern Time

AGENDA (pdf version)
9:00 a.m. Call to Order/Roll Call – Judy Sparrow, Office of the National Coordinator
9:05 a.m. Meeting Objectives and Outcomes: Consumer Engagement
     – Paul Tang, Chair, and George Hripcsak, Co-Chair
9:15 a.m. Panel 1: Meaningful Use of HIT in the Real Lives of Patients & Families
     Scott Mackie, Health & Wellness, IDEO, Inc.
     Eric Dishman, Director, Health Innovation & Policy, Intel Corp.
     M. Chris Gibbons, Johns Hopkins University Urban Health Institute
     Neil Calman, MD, Institute for Family Health
     Regina Holliday, patient voice
10:45 a.m. Panel 2: Incorporating Patient-Generated Data in Meaningful Use of HIT
     James Ralston, Group Health Research Institute
     James Weinstein, Dartmouth Institute for Health Policy & Clinical Practice
     Patti Brennan, University of Wisconsin, Project Health Design
     Carol Raphael, Visiting Nurse Service, NY
     Dave DeBronkart, ePatient Dave
     David Whitlinger, NY eHealth Collaborative
     Hank Fanberg, Christus Health
12:15 p.m. LUNCH BREAK
1:15 p.m. Panel 3: Policy Challenges & Infrastructure Requirements to Facilitate Patient/Consumers’ Meaningful Use of HIT
     Joy Pritts, Chief Privacy Officer, ONC
     Carl Dvorak, Epic Corp., (Provider/Vendor Perspective)
     Cris Ross, MinuteClinic
2:45 p.m. Summary Comments from the Workgroup
3:15 p.m. Public Comments
3:30 p.m. Adjourn

Available Testimony as of April 19, 2010
–Dave DeBronkart, ePatient Dave – Testimony [PDF - 384 KB]
–Patti Brennan, University of Wisconsin, Project Health Design – Testimony [PDF - 628 KB] 
           Brennan, Health in Everyday Living – Article [PDF - 636 KB]
–James Ralston, Group Health Research Institute – Testimony [PDF - 58 KB]
–Carol Raphael, Visiting Nurse Service, NY [PDF - 567 KB]
–Carl Dvorak, Epic Corporation – Testimony [PDF - 357 KB]
–Hank Fanberg, Christus Health – Testimony [PDF - 614 KB]

To participate via
Webconference:
At least 10 minutes prior to the meeting start time, please go to: http://altarum.na3.acrobat.com/mu Exit Disclaimer

  • (If for any reason the link does not work, simply copy and paste the URL into your browser’s address bar)
  • Select “enter as a guest” 
  • Type your first and last name into the field 
  • Click “enter room” 
  • Test Your System:
    • You will need to have an up-to-date version of Flash Player to view the webconference.  Please test your system prior to the meeting by visiting http://altarum.na3.acrobat.com/common/help/en/support/meeting_test.htm 
    • When running this system test, you do not need to install the Adobe Connect Add-in (step 4 of the test), as that is not relevant to this meeting.
* Please note:  Space in the Web conference is limited.  If for any reason you are unable to log in, you can still dial in via phone to listen to the audio (numbers below). 

Audio:

  • You may listen in via computer or telephone.
    • US toll free:   1-877-705-2976
    • International Direct:  1-201-689-8798

iPhone:

  • You can now watch & listen via your iPhone or iPod Touch (requires Wi-Fi). Here is how:
    • You must acquire the Connect Pro App for the iPhone/IPod Touch
      • On a computer – iTunes> Applications folder
      • On your mobile device – App Store
    • Search for the “Adobe Connect Pro” App
    • Follow the App Store steps to download the application
    • Once you have the app installed on your mobile device, you can simply follow the link & instructions above for participating in the Web conference.

See previous post on “Creating a Vision for Engaging Patients and Families Thru Meaningful Use of Health IT” on e-Healthcare Marketing.

Creating a Vision for Engaging Patients & Families Thru Meaningful Use of Health IT: ONC

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Creating a Vision for Engaging Patients and Families Through the Meaningful Use of Health IT;  April 20 FACA Meeting Set
Wednesday, April 14th, 2010 | Posted by: Joshua Seidman PhD on ONC’s Health IT Buzz Blog and reposted below.

“The meaningful use of patient-facing e-health applications has great potential to improve the quality and efficiency of health and health care. Particularly for people with chronic conditions, research demonstrates that patient activation, chronic care self-management, and shared decision making with their clinicians can have a substantial impact on effectively managing their health.

“The California HealthCare Foundation released new consumer survey data this week which confirms and complements a variety of other research findings. Americans who have electronic access to personal health information know more about their health, ask more questions of their clinicians, and take better care of themselves.

“That’s part of why the Health Information Technology Policy Committee (HITPC) that advises ONC recommended patient/family engagement as one of the five health outcome priorities for meaningful use (MU) of EHRs. And CMS included several relevant objectives in the proposed MU rule it released in January (comments from more than 2,000 organizations and individuals are currently being reviewed by CMS and ONC):

  • Consumers’ timely copy of, and access to, electronic records
  • After-care summary for each outpatient encounter
  • Discharge summary for each hospital stay
  • Patient reminders for preventive & follow-up care”

“The HITPC’s MU Workgroup will be holding a series of public hearings over the next several months to inform its recommendations for Stages 2 and 3 MU definitions. The first of these hearings focuses specifically on the patient/family engagement domain and will be held April 20.

“In addition to the formal hearing, ONC and the MU Workgroup strongly encourage input from the public on this blog regarding the evolution of MU objectives to drive better patient and family engagement. In the coming days, some of the panelists who will testify on April 20 will post blog entries on this site as well.

“We really want to know more about the meaningful use of HIT in the real lives of patients and families. We will explore how patient-generated data can be incorporated into the meaningful use of EHRs. We also need to address the policy challenges and infrastructure required to support patients’ and families’ meaningful use of HIT. This information will help us to develop a long-term framework for the evolution of HIT applications to facilitate patient and family engagement.

“Your input on the same questions we’ve asked the panelists to answer would be most helpful to our efforts, although all comments are welcome. The full list of questions follows.

“Panel 1:  Meaningful Use of HIT in the Real Lives of Patients & Families
a. What are consumers’ health information needs in the context of their real lives?
b. How do results of ethnographic studies of individuals with chronic health conditions inform our understanding of how HIT can improve their use of health information and connectivity with their providers to improve their health?
c. What is the evidence base for patient benefit from their direct use of PHRs and other HIT that interacts with EHRs?
d. What is the role of mobile applications in improving health of individuals?  Is there a specific role for underserved populations?
e. How can we use HIT to make information and knowledge actionable for patients?
f. How does HIT enhance collaboration between patients and their providers and change how the patient’s health is managed?”

“Panel 2:  Incorporating Patient-Generated Data in Meaningful Use of HIT
a. What is the role of patient-generated data in improving health of individuals?  What is the evidence?
b. How can patient-reported data be integrated into EHRs and the clinicians’ workflow to improve care management?
c. How can future conceptions of personal health information platforms and information tools facilitate patient-centered care, including transparency, coordinated care, patient activation, while protecting patient privacy?
d. What is the role of the patient in ensuring data in EHRs is accurate?
e. What are your recommendations for meaningful use criteria for 2013 and 2015 that are achievable by a broad spectrum of providers?”

“Panel 3:  Policy Challenges & Infrastructure Requirements to Facilitate Patient/Consumers’ Meaningful Use of HIT
a. What is required for vendors to be able to export data from EHRs in such a way that consumers and patients can use the data in meaningfully?
b. What is the role of providers in making data available to patients in a meaningful way?
c. What are the meaningful uses of that data once exported?  What evidence of measureable benefits exist?
d. What are the privacy and trust issues that might affect this from happening?”

–Joshua Seidman PhD, Acting Director
Meaningful Use in the Office of Provider Adoption Support
Office of National Coordinator for Health IT

Managing Personal Health Information: An Action Agenda from AHRQ Workshop

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Executive Summary from AHRQ Workshop:
“Managing Personal Health Information:
An Action Agenda” 
Mary Mosquera reported in Government HealthIT on April 12, 2010 “The Agency for Healthcare Research and Quality (AHRQ) released a set of recommendations last week calling for health IT vendors to focus more of their attention on the needs of consumers in developing electronic health record systems.”

Per AHRQ Web site accessed March 13, 2010, “Managing Personal Health Information: An Action Agenda (PDF, 828KB) provides a framework for studying personal health information management and patient-centered health IT to advance research, implementation, and policy development in this field through specific recommendations and an action agenda. These recommendations will be useful for health IT researchers, industry, and policymakers.”

The executive summary of the report, dated March 2010, is excerpted below.

Report PDF
Executive Summary

Background
“This report presents key recommendations and an action agenda developed during a 2-day workshop convened by the Agency for Healthcare Research and Quality (AHRQ) on July 27-28, 2009, entitled “Building Bridges: Consumer Needs and the Design of Health Information Technology.‖ The purpose of this event was to develop a framework for characterizing personal health information management (PHIM) that would inform the design of effective consumer health information technology (health IT) systems. The workshop brought together leaders from multiple disciplines, including health sciences, health informatics, information science, consumer health IT, and human factors research, with specific expertise in the fields of PHIM and/or health IT. The workshop moderator was Patricia Flatley Brennan, who also served as an advisor on this report.

“Through small-group discussions and presentations, the participants considered the diverse needs of different consumer groups with respect to managing their personal health information and how consumer health IT solutions can be designed to better meet those needs. Based on these discussions and presentations, the participants were asked to set an agenda for advancing the field of consumer health IT that would include specific recommendations for research, industry, and policy.”

Key Workshop Themes
“Effective management of personal health information empowers patients to actively partner with their health care providers in making important health care decisions, which can potentially lead to better health care and better health care outcomes. At the same time, PHIM involves a complex array of tasks that many consumers find challenging. These tasks may include tracking and integrating health-related information obtained from various sources; coordinating care across different health care providers; and making critical decisions about one’s health based on physician recommendations, test results, office visits, and other bits and pieces of personal medical information. The requisite tasks can be even more complicated for individuals with special needs, such as the elderly, whose health care needs often exceed those of the general population, and whose capacity to effectively manage those needs is typically compromised by poor health or other considerations.

“In light of these considerations, workshop participants were asked to share their understanding of consumers’ current PHIM practices, and to identify what more needs to be known about those practices in order to design better consumer health IT solutions. Participants were also asked to consider the extent to which currently available tools meet consumer needs, and what changes or design innovations would be needed to produce more patient-centered health IT systems. The following points highlight the main themes that emerged from the workshop.”

Defining PHIM
“Health care consumers manage their personal health information in countless different ways, and many factors influence the methods they use to perform the tasks and activities that characterize PHIM, such as health status, age, and attitudes about health and medical care. Moreover, a consumer’s health information management practices can change over time as his or her capacities, health status, family status, and needs change. PHIM can occur anywhere, anytime; in other words, it is not restricted to a single, isolated location or event like a doctor’s office or a medical appointment. All of these considerations have important implications for the design of consumer health IT systems. For example, they point to the need for systems that are flexible and accessible to different types of users and across different settings.”

Design Issues
“Consumer health IT solutions can play an important role in enabling patient-centered care, which the Institute of Medicine (IOM) defines as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions‖ (IOM, 2001). In order to truly benefit consumers in this way, however, consumer health IT solutions must, first and foremost, take into account the particular needs of the consumer, rather than the needs of the physician, the insurance company, or some other entity that has a stake in the patient’s health care.

“To ensure broad access to these solutions, developers will also need to consider the particular needs, goals, preferences, and capacities of subpopulations like the elderly, the chronically ill, the disabled, and the underserved, which typically face one or more barriers that interfere with their ability or willingness to use consumer health IT systems. Specific barriers may include access to, and comfort with, technology; cognitive and physical impairments; health literacy; and cost. Until the needs of these subpopulations, who likely pose the most challenging design considerations, are taken into account, the IT solutions that developers create will likely fall short of promoting patient-centered care.

“Consistent with the principles of patient-centered care, these tools must also reflect respect for the patient. Specifically, these tools should, among other things, ensure that the patient decides who has access to his or her personal health information, and, for those tools that are interactive, they should communicate information to the patient in a way that the patient can easily understand.

“In order to ensure that consumers will actually use consumer health IT solutions, it will also be important to design those solutions to fit seamlessly into the user’s life.”

Important Steps for the Advancement of Consumer Health IT
“Workshop participants identified several steps that can be taken to promote innovation in consumer health IT. Key points included:

“Build a knowledge base about consumers’ PHIM needs and practices and related design principles. Additional research is needed on consumers’ PHIM practices and related design issues in order to develop consumer health interventions that can best support consumers in effectively managing their health and health-related information.

“Support more interdisciplinary efforts to drive innovation. Collaboration between academic institutions and the technology industry could lead to significant advances in consumer health IT, but too many factors prevent the two types of entities from working together. Within the technology industry, information sharing could potentially lead to better, more efficient designs, yet developers tend to avoid such alliances out of concern for the potential costs and risks of collaborative efforts. To facilitate more partnerships across and within academia and industry, mechanisms will need to be established that reward collaboration and protect the rights and investments of all stakeholders.

“Build a more robust health IT infrastructure to ensure access to all health care consumers. Innovations in consumer health IT will require the development of a robust infrastructure that can support the dissemination of new solutions across different platforms. This infrastructure will need to ensure that consumers have access to the technology regardless of their age, income, literacy level, or other potential barriers.”

Recommendations

A. Research
1. User Needs and Context
     Recommendation 1a: “To inform the design of PHIM tools, technologies, and applications, research is needed to investigate: The needs and preferences of diverse user groups in different contexts., User goals, activities, and PHIM practices. User capacities (e.g., cognitive, physical, health literacy). User motivation (including beliefs and preferences).

     Recommendation 1b: “To address current gaps in knowledge, researchers should develop a taxonomy of needs and users that can be mapped to design strategies

     Recommendation 1c: “To inform the design of IT-based PHIM tools for the broader population, researchers should identify and study “expert‖ consumer groups (e.g., frequent health care consumers) as models.”

2. Improving Design of Consumer Health IT
“To improve consumer health IT design, researchers should:
     Recommendation 2a: “Investigate the application of design methodologies used in other industries to PHIM.

     Recommendation 2b: “Identify qualitative and quantitative metrics for evaluating good design.

     Recommendation 2c: “Test design feasibility before development.

     Recommendation 2d: “Identify and evaluate intervention strategies that encourage and facilitate adoption of consumer health IT among users.”

3. Evaluation Research
     Recommendation 3a: “Rigorous research is needed to examine the impact of consumer health IT use on various outcomes (including behavioral, clinical, patient experience, provider experience, efficiency, and unanticipated outcomes), and the specific relationship of design to those outcomes.

     Recommendation 3b: “New research methods and approaches need to be developed to evaluate PHIM systems that are already in the field.”

B. Industry and Policy
     Recommendation 1: “To advance the development of innovative consumer health IT solutions, new mechanisms need to be established that can facilitate collaboration between industry and academia.

     Recommendation 2: “To help support the development of consumer health IT solutions that meet the needs of all consumers, incentives should be established for industry to invest more resources in Research & Development of such solutions.

     Recommendation 3: “To build awareness about PHIM among young health care consumers, grade-appropriate PHIM education should be incorporated into school curricula.

     Recommendation 4: “Policymakers and industry stakeholders should agree upon and establish standard ethical guidelines for the use and reuse of personal health information.

     Recommendation 5: “To promote the development and adoption of consumer health IT, new and existing policy implications need to be evaluated.

     Recommendation 6: “To enable patient-centered care and ensure broad access to consumer health IT, policymakers and industry stakeholders need to identify ways to build a more robust health IT infrastructure.”

Related AHRQ Reports from October 2009
“New AHRQ-Funded Reports on the Usability of Electronic Health Record (EHR) Systems”

“To explore the opportunity to improve EHR system usability, AHRQ commissioned the creation of two reports that synthesize the existing research and evidence in this area and suggest common methods to evaluate EHR usability going forward.

“Electronic Health Record Usability: Evaluation and Use Case Framework (pdf) synthesizes the literature and best practices regarding the usability of EHRs, and it provides a set of use cases to evaluate information design in primary care IT systems.

“Electronic Health Record Usability: Interface Design Considerations provides recommended actions to support the development of an objective EHR usability evidence base and formative policies to systematically improve the usability of EHR systems.”

Health IT Listening Session Apr 6 Agenda Set: Strategic Framework

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Listening Agenda set for Health IT Strategic Framework Session
HIT Policy Committee Strategic Plan Workgroup
Tuesday, April 6, 2010
Per Office of the National Coordinator (ONC) for Health IT, “The objective of the listening session is to obtain feedback from the healthcare community regarding the Health IT Strategic Framework which will become foundation for the updates to the Federal Health IT Strategic Plan. The Health IT Strategic Plan will focus on 2011 through 2015 time period as well as lay the ground work for the period beyond 2015 to create a learning health system through the effective use of HIT.”

Presentation [PPT - 1.60 MB]

AGENDA (pdf version)
12:00 Welcome
     –Jodi Daniel, JD, MPH, Co-Chair, Strategic Plan Workgroup
12:10 Overview of the Health IT Strategic Framework Paper: Development & Vision
     –Paul Tang, MD, Vice Chair, HIT Policy Committee, Chair, Strategic Plan Workgroup
12:25 Learning Health System
     –Presenter / Moderator: Patricia Brennan – 10 min
     –Public Comments – 25 min
1:00 Meaningful Use of Health Information Technology
     –Presenter / Moderator : Paul Tang – 10 min
     –Public Comments – 25 min
1:35 Policy and Technical Infrastructure
     –Presenter / Moderator: Paul Egerman – 10 min
     –Public Comments – 25 min
2:10 Privacy and Security
     –Presenter / Moderator: Deven McGraw – 10 min
     –Public Comments – 25 min
2:45 Open Discussion, Closing Remarks & Next Steps
     –Paul Tang

Registration required:
Visit http://events.signup4.com/hitstrategic to register to attend the session.  Meeting materials will be posted at http://healthit.hhs.gov/StrategicPlanWG as they become available.

For more details about strategic framework, please see earlier post on e-Heathcare Marketing.

Leveraging Health IT for Patient Empowerment Webinar – Apr 8 from AHRQ

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Leveraging Health IT for Patient Empowerment Webinar
Sponsored by AHRQ National Resource Center for Health IT
April 8, 2010               3:00 – 4:30 p.m., EDT
Emailed and accessed on Web March 25, 2010.

“Free 90-minute teleconference will explore the latest research on how patients can utilize health IT to increase participation in their healthcare. Sponsored by the Agency for Healthcare Research and Quality’s (AHRQ) National Resource Center for Health IT.”

Presenters:

  • “Alexander Krist, M.D., M.P.H., serves as an Assistant Professor in the Virginia Commonwealth University (VCU) School of Medicine’s Department of Family Medicine. The majority of his research is conducted through the VCU Department of Family Medicine’s multidisciplinary research team and its practice-based research network (the Virginia Ambulatory Care outcomes Research Network) of more than sixty primary care practices, spanning six health systems assembled to coordinate on research projects. In 2004 he helped direct his practice to implement a paperless electronic health record including e-prescribing, laboratory and radiology interfaces, electronic billing, performance monitoring, and a registry for population management.  
  • “Christine Ritchie, M.D., M.S.P.H., is an Associate Professor at the University of Alabama Birmingham (UAB) School of Medicine’s Center for Palliative Care. She holds the title of Director of the UAB Center for Palliative Care and Director of the Palliative Care Section within the Division of Gerontology and Geriatric Medicine. She served as the VA Network 9 Palliative Care Consult Team mentor, a member of the VA Network 9 Health Systems Council, and co-chair of the Network 9 Geriatrics and Extended Care Committee.
  • “Christine Sinsky, M.D., B.S., is a General Internist at Medical Associates Clinic and Health Plans, in Dubuque, Iowa.  She is a frequently invited lecturer on practice innovation, redesign, and the patient centered medical home (PCMH) and has been a presenter at the Patient Centered Primary Care Collaborative Stakeholder meeting. She serves on the physician advisory panel for the National Committee for Quality Assurance (NCQA) physician recognition programs and is a Director on the American Board of Internal Medicine.“

“Dr. Sinsky will introduce the topic by providing an overview of challenges and innovations facing patient empowerment and health IT systems. Building on this foundation, Dr. Krist will discuss findings from a randomized controlled trial to evaluate the impact of a personal health record (PHR).  In his presentation he will explain how this PHR links patients to their health information in their physician’s electronic medical record (EMR) and provides personally tailored prevention recommendations to patients. Dr. Ritchie will discuss ongoing research in developing evidence-based tools to support patient-centered care. She will explain the findings from a randomized controlled trial investigating how to utilize IT systems to support patients with complex medical conditions as they transition from hospital to home-based care.  To conclude our presentation, Dr. Sinsky will discuss her on-the-ground experience with empowering patients via IT systems in clinical settings and the key barriers and enablers to success.”

To register for the teleconference, please visit: https://ahrq.peachnewmedia.com/store/seminar/seminar.php?seminar=4324 and select “Register.”

ONC Releases Whitepaper on Consumer Consent Options for Electronic HIE

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ONC Releases Whitepaper on Consumer Consent Options for Electronic Health Information Exchange
Emailed from ONC on March 24, 2010
“The whitepaper examines issues regarding whether, to what extent, and how individuals should have the ability to exercise control over their health information in an electronic health information exchange environment.  It looks at existing approaches and details policy options, considerations, and analysis.  This whitepaper will serve as input to, and be reviewed by, the HIT Policy Committee’s Privacy and Security Workgroup as it prepares to make recommendations related to consumer consent in an electronic health information exchange environment.  The whitepaper is the first in a series of privacy and security reports developed by George Washington University under contract with ONC.”

Privacy and Security Whitepaper Series
Consumer Consent Options for Electronic Health Information Exchange: Policy Considerations and Analysis

  • Cover Page and Executive Summary [PDF - 40 KB]
  • Consumer Consent Options — Complete Whitepaper [PDF - 735 KB]
  • Appendix A: State Model Table [PDF - 73 KB]
  • Appendix B: State Law Table [PDF - 62 KB]
  • Appendix C: Other Countries [PDF - 60 KB]

    • Privacy and Security and Health Information Technology
    Excerpted from ONC on March 24, 2010.
    “Electronic health information exchange promises an array of potential benefits for individuals and the U.S. health care system through improved clinical care and reduced cost. At the same time, this environment also poses new challenges and opportunities for protecting individually identifiable health information. In health care, accurate and complete information about individuals is critical to providing high quality, coordinated care. If individuals and other participants in a network lack trust in electronic exchange of information due to perceived or actual risks to individually identifiable health information or the accuracy and completeness of such information, it may affect their willingness to disclose necessary health information and could have life-threatening consequences. Coordinated attention at the Federal and State levels is needed both to develop and implement appropriate privacy and security policies. Only by engaging all stakeholders, particularly consumers, can health information be protected and electronically exchanged in a manner that respects variations in individuals’ views on privacy and access.”

    (The section above labelled “Privacy and Security Whitepaper Series” contains the links to the first White Paper. ONC shared additional resources shown below.)

    Other Resources

    HIT Standards Committee Mtg: Consumer Permissions, Consent Mgmt- March 24, 2010

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    HIT Standards Committee–Consumer Permissions, Consent Management
    March 24, 2010
    9:00 a.m. to 2:15 p.m. [Eastern Time]
    Below agenda, key points are excerpted from Privacy and Security Workgroup about consumer permissions and consent management, including schedule for educational sessions.

    A G E N D A (pdf)
    Washington, DC

    9:00 a.m. CALL TO ORDER – Judy Sparrow
    Office of the National Coordinator for Health Information Technology
    9:05 a.m. Opening Remarks – David Blumenthal, MD, MPP
    National Coordinator for Health Information Technology
    9:15 a.m. Review of the Agenda – John Halamka, Vice Chair
    9:20 a.m. Priority Setting & Synchronization with the HIT Policy Committee
    John Halamka, Vice Chair
    9:45 a.m. Implementation Workgroup Report on Implementation Starter Kit Hearing
    Aneesh Chopra, Chair
    Liz Johnson, Workgroup member
    Cris Ross, Workgroup member
    10:30 a.m. NHIN Direct Interoperability Framework
    Doug Fridsma, Office of the National Coordinator
    11:15 a.m. Clinical Operations Workgroup/Vocabulary Task Force Update
    Jamie Ferguson, Chair
    11:45 a.m. Clinical Quality Workgroup Update
    Janet Corrigan, Chair
    Floyd Eisenberg, Workgroup member
    12:15 p.m. LUNCH
    1:00 p.m. Privacy & Security Workgroup Update (PPT)
    Dixie Baker, Chair
    Steve Findlay, Co-Chair
    1:30 p.m. Report on Certification NPRM (PPT)
    Carol Bean, Office of the National Coordinator
    Steven Posnack, Office of the National Coordinator
    2:00 p.m. Public Comment
    2:15 p.m. Adjourn

    To Participate
    Webconference
    Audio:
    You may listen in via computer or telephone.
    US toll free:   1-877-705-6006
    International Direct:  1-201-689-8557
    Confirmation Code: HIT Committee Meeting  

    Key Notes Excerpted from
    Privacy and Security Workgroup Slides
    Focus on Consumer Permissions, Consent Mgmt
    PPT Slides
    Progress
    –Updated IFR Review to incorporate comments from the HIT Standards Committee – submitted to HITSC Chairs
    –Supporting HIT Policy Committee’s Privacy and Security Policy Workgroup, and aligning our standards efforts to their priorities
              Consent management
              Review of existing security policy inherent in HIPAA Security Rule
    –Launching educational sessions on standards activities around consent management

    Consumer Health Permissions
    –Privacy Consent (or Consent Directive) – Consumer’s written or verbal permission to collect, use, and/or disclose individually identifiable health information (IIHI)
    –Privacy Authorization – A signed, written document that contains all of the elements required by the HIPAA Privacy Rule and that gives a covered entity permission to use or disclose specified IIHI for specified purposes
    –Informed Consent – Consumer’s written permission to perform a specific medical procedure, or to participate in a specific research study or clinical trial, that is given only after the consumer has been fully informed of the purposes, risks, benefits, confidentiality protections, and other relevant aspects of the activity

    Consent Management Today
    –Consumer permissions captured as manual signature on paper form
    –Paper forms filed in each organization who holds consumer’s private health information

    Consent Management Tomorrow
    –Consent/Authorization: Consumer digitally signs consent or authorization
    –Permissions and updates captured as part of health record
    –Permissions interpretable by humans & computers
    –Permissions cross-validated & translated into consent rules enforced by security access control mechanisms
    –Rules inexorably tied to information exchanged – updates propagated to all data instances throughout life cycle

    Standards Needed
    –Digital signatures
    –•Privacy policies •Data model & schema •Permission syntax & vocabulary
    –•Cross-validation of consumer permissions •Maintaining and retrieving permissions •Translating permissions into access-control rules •Enforcement and auditing of permission-related activities
    –•Exchanging permissions & access rules •Propagating permission revocations & modifications

    Educational Sessions Re: Standardization Efforts Relating to Consent Management
    •April 1, 2:00-4:00pm ET:  Organization for the Advancement of Structured Information Standards (OASIS) / International Security Trust and Privacy Alliance (ISTPA) Privacy Management Reference Model (PMRM); Speakers – John Sabo, Michael Willett
    •April 23, 2:00-4:00pm ET:  Integrating the Healthcare Enterprise (IHE) Basic Patient Privacy Consents (BPPC) Profile; Speaker – John Moehrke
    •[Schedule TBD]:  Health Level 7 (HL7) Version 3 Domain Analysis Model: Medical Records; Composite Privacy Consent Directive – Speaker (TBD)
    •[Schedule TBD]:  OASIS Cross-Enterprise Security and Privacy Authorization (XSPA) and eXtensible Access Control Markup Language (XACML) – Speaker (TBD)