Consumer Health Information Quality

We usually write about the exchange of individual patient's information here at HealthInfoEx, but a recent article by R. Scott Braithwaite at New York University Medical Center, published in the Journal of General Internal Medicine, brings up a very fine idea about the quality of consumer health information.  To help stem the tide of over-hyped scientific trivia passed off as "breakthrough in health care," Braithwaite suggests that medical journals  include a consumer rating scale.  He very reasonably suggests using the US Preventive Services Task Force quality of evidence scale as a template and has a number of clever ideas to encourage lay media outlets to use it.

Braithwaite is worried about blogs (which he refers to, with a bit of a sniff, as "gray literature") and fears they wouldn't play along. Perhaps the blog certification services, like the Health on the Net Foundation, should require it to earn their seal of approval. (HON puts HealthInfoEx through the wringer on a regular basis.)

Kudos to Scott Braithwaite for a good idea on a vexing problem!

Clinical, Technical and Policy Issues in Exchanging Health Information

Every once in a while we get a request by a reader to post a guest entry on the blog. Frankly, we remain a bit dubious. But they are so eager, we allow the better angels of our otherwise controlling nature some free rein. So, here is a guest post for your interest and enjoyment.  Many thanks to author Rachel Davis who more often writes on Radiology degrees . She welcomes your comments at racheldavis65[@]gmail[.]com.

Clinical, Technical and Policy Issues in Exchanging Health Information

Health Information Exchange (HIE) has been proposed as one of the best ways to reduce waste and bring down costs in the healthcare system – when patient information is shared electronically across disparate healthcare systems without compromising on security, meaning and accuracy, it enables optimal provision of health care. For HIE to achieve success and attain its goals, the clinical, technical and policy issues relevant to the exchange of health information must be defined clearly and followed accurately.

Clinical issues are those that relate directly to patient care and which facilitate the provision of effective care in the shortest possible time and at the least possible cost. A study conducted by the Medical College of Wisconsin has found that ER doctors who have electronic access to patient data through a HIE spend less time in gathering information and make clinical decisions that are better informed and lead to better care for the patient. Clinical issues of a HIE deal with the accurate collection and compilation of information such as lab procedures, prescribed medication, patients’ main complaints, prior visits and treatments, and any other data that helps the attending doctor gain a more comprehensive picture of the medical history of the patient. When clinical information is accurate, it prevents errors, reduces wastage of time, effort, and money, and eliminates redundancy – time and money are not wasted on tests that have already been done, and medicines that cause allergies and adverse reactions are not prescribed inadvertently. 

The technical issues relate to the software and hardware requirements for the implementation of the HIE. The underlying architecture of the HIE must be designed and implemented, and it should include information relating to medication history standards, laboratory result standards, issues that relate to data quality, and the implementation of a record locator service.

Policy issues relate to the privacy aspects in a networked HIE, privacy policies and procedures that relate to a HIE, notification and consent when using a record locator service, matching patients to their records correctly and without any mix-ups, authenticating and setting levels of access for users, deciding on patient access to their own information (and protecting information of other patients), auditing access to a HIE, breaches of confidential health information, and a common and standardized framework for networked personal health information.

A Health Information Exchange must resolve clinical, technical and policy issues before it can be implemented successfully in any healthcare setting.

The Little Blue Button

The Markle Foundation is promoting easier access to health information for patients. They propose that systems that contain personal health information have "a little blue button" that allows the patient to download all their own data.  What are the upsides?  This Markle Policy Brief suggests that it would::

• Change consumer expectations and help them become more efficient in managing
their health information.
• Increase market pressure for technical standards to exchange electronic health data.
• Enable innovation through a host of applications and services that could add
significant value to individuals by using their information with their permission, such
as tools to help people with diabetes track their blood sugar, medication use, and
preventive care.

We're all for that!  How about downsides? Well, privacy certainly seems an issue. Can we be sure that others aren't downloading our embarrassing details? The technology is available for encryption, passwording, and the like. The biggest threats will be the usual "social hacks" like phishing, password guessing, and just conning folks out of their passwords.

What about erroneous information? We certainly don't want to be telling patients stuff about their health status that isn't true. Thinking that you have a nasty health problem because of an erroneous billing entry can cause some pretty sleepless nights. So, we need real clarity on what is valid personal health information (such as a confirmed diagnosis) and what is merely a weak proxy (a single test result, a billing code, a possibility mentioned in a differential diagnosis list, etc.).  However, the best strategy for errors in the data stream is to have someone who cares check it out. Giving patients an easy way to review their medical record and give corrective feedback ("I had heartburn, not a heart attack.") would be a great leap forward.

It looks like the VA may be among the first systems to offer a blue button. They have announced that it is available to users of their MyHealthVet portal. However, the sample report they show seems awfully long on patient-entered data and awfully short on the diagnoses, lab results, procedures, problems lists, and progress notes that make up the VA's medical records.

So, there is a lot of good in the idea of the "Little Blue Button" (beyond the wonderful pirating of a ubiquitous pharmaceutical marketing campaign), but, as always, the devil will be in the details.

The CDC runs one of the great health information resources for those of us trying to figure out how to keep folks health: The Behavioral Risk Factor Surveillance System. It uses phone interviews of randomly selected people from all over the US to make estimates of various health problems. They recently released new data, including the prevalence of diabetes by metropolitan area. For those of you keeping score, the winners and losers are:

Highest prevalence of diabetes:

Kingsport-Bristol, TN-VA 15.4%

Huntington-Ashland, WV-KY-OH 14.7%

Shreveport-Bossier City, LA 13.4%

Charleston, WV 13.1%

Chattanooga, TN-GA 13.1%

Lowest prevalence of diabetes: Bozeman, MT 2.8%

Fort Collins-Loveland, CO 4.2%

Fargo, ND-MN 4.4%

Provo-Orem, UT 4.7%

Heber, UT 4.8%

(My home town of Burlington, VT, where we developed the Vermedx Diabetes Information System, came in 6th at 5.1%. We're sore losers and we won't rest till we're the best!)

Here is map showing the whole nation:

These kind of data can tell us a lot about where we need to go to have the biggest impact on people's lives.

Crowd Sourcing for Maternal Health

The high rate of devastating complications of pregnancy, labor and delivery continues to be a desperate problem, especially in poorer parts of the world. The good folks at Oxford University are trying a new approach to understanding the barriers to better maternal health and perhaps to finding answers: they're asking folks. Which folks? Just about everybody who takes care of expectant mothers in third world settings.  They've set up a web site, Global Voices for Maternal Health, to use crowd-sourcing to get more and better input into this problem. (Even if you're not a third world maternal health provider, you're welcome to participate in the discussions.)

Crowdsourcing is the use of large numbers of distributed workers (usually interacting over the Internet) to solve problems or do tasks that are difficult for smaller teams to do. It has been used in the arts, business (especially marketing), and in science, but hasn't had much application in health that I know of. (Innocentive has applied it to biomedical science, but not to health care delivery.) So, this project is a bit of first.

Will they get the magic bullet answer that has eluded all the experts and policy makers for decades? Probably not. But they might get more than a few really great ideas that can have a positive impact on the lives of millions. It's a clever way to take advantage of new technologies to generate more and better information and certianly worth a try.

The Next Great Healthcare Revolution?

Your hosts here at HIE are happy to share the bully pulpit on occasion with folks who want to put their 2 cents in about moving information around to make care better. So, here is piece by guest blogger Alexis Bonari.

Health Information Systems: The Next Great Healthcare Revolution 

As online database technology moves to the forefront in many industries, we are faced with a crucial question: would a Health Information System create an environment that fostered a higher standard of patient care?  It would certainly make the transfer of records from one doctor or healthcare provider to another much simpler than it currently is.  

How it would work.
A comprehensive Health Information System would encompass all of the patient’s medical records.  Often, a patient might forget to report a treatment they had undergone years in the past.  When seeking treatment for a more current problem, the doctor overseeing the case might benefit from knowing about the previous procedure or diagnosis. 

Prevention is key.
Further, the past case history might be used to develop a preventative care plan for given potential illnesses.  Let’s say, for example, that a patient had suffered from an eating disorder during their adolescence.  That person would be more likely to experience the effects of weakened bones and teeth later in their adult life.  A few simple preventative measures would potentially prevent them from losing teeth due to calcium deficiency or from allowing osteoporosis to gain a foothold.  Without access to their adolescent medical records, a doctor wouldn’t have the information necessary to create such a plan.

The power of statistics.
Over the long term, a Health Information System would allow the medical community to track the health of the nation, individuals, families, and certain demographics.  No longer would we have to rely upon statistical sampling techniques to determine the exact incidence of cancer in a given population.  We would already have the data available. Currently, data used to determine such statistics is expensive and difficult to gather.   

Family ties.
Further, families could identify disease trends over multiple generations. As more is understood about the genetic component of certain types of cancers, etc. a statistical model could be produced for each individual that would predict the likelihood that they would develop particular diseases or conditions. Once again, preventative care could be tailored to the specific needs of the individual.

Privacy issues.
The primary concern when creating a Health Information System would be the problem of patient privacy.   If steps weren’t taken to prevent it, financially interested individuals and organizations, such as health insurance companies and any government health organization, might use the information obtained as justification to withhold or limit treatment from currently healthy individuals.  This problem would have to be foreseen and prevented from the inception of the Health Information System.  Ideally, the system should only be used for improving patient care and for disease prevention. 

Alexis Bonari is a freelance writer and blog junkie. She is currently a resident blogger at  First in Education, researching various accredited online degree programs. In her spare time, she enjoys square-foot gardening, swimming, and avoiding her laptop.

Secure messaging for everyone?

HIE has it on good authority that the feds are looking at a particularly attractive combination of technologies to enable all sorts of users, from sophisticated gear heads with fancy EMR installations to solo docs with just a web browser, to exchange secure messages across platforms. This would be a substantial step forward for both one-at-a-time patient coordination across practices and for automatic messaging to provide decision support and other intelligence. It will need an interface that is really, really simple for the basic user (not much different than a standard e-mail program), flexible hooks to allow interfacing with EMRs and registries, AND highly secure transmission across firewalls. If it meets all these criteria, NHIN Direct will be a winner.

How do you actually DO the "exchange" part of Health Information Exchange?

In spite of the great leaps made in standardization of message formats and contents (HL7, CCR, XML, etc., etc.), it is still sometimes remarkably difficult to get a message out of one electronic system and into another. Each laboratory information system, Electronic Health Record, registry or portal has its own requirements, issues and quirks.  Absent a true lingua franca, those of us doing health information exchange spend a lot of time and money designing, negotiating, implementing and repairing interfaces.

A financial services company out of San Mateo, CA called CloudPrime has been doing this kind of translation and interfacing for banks for some time and is now moving into health care. They say they can build an encrypted interface between two systems in a matter of days and can guarantee delivery of all messages. Their stuff looks good on paper (on browser?) and their rep, Jeremy Miller, quoted some pretty attractive prices, so it could be a real resource as we develop new ways to move the data around.

Mobile technology and global health

The National Institutes of Health, through its Foundation, is getting more interested in mobile technology for health care.

Call for presentations about mobile technology and global health

mHealth Summit A Public-Private Partnership of the Foundation for the National Institutes of Health November 8–10, 2010 Walter E. Washington Convention Center Washington, D.C. Abstract Submission Deadline: Thursday, July 1, 2010, 11:59 p.m. EDT The 2010 mHealth Summit will bring together leaders enabling cutting-edge research, evidenced-based practice and innovative policy solutions to advance the benefits mobile technology can bring to the health and well-being of developed and developing world populations. The event organizers are seeking abstracts for presentations from the public and private sectors that highlight ground-breaking health research, information and communication technologies, systems architecture and global partnerships that leverage mobile technology to improve global health outcomes. The organizers also are seeking demonstrations of research technologies such as mobile phones, smart phones, mobile phone applications, global positioning systems (GPS), personal digital assistants (PDAs), mobile electronic sensors (e.g., accelerometers), portable physiological sensors (e.g., ambulatory glucose monitors), mobile environmental sensors, integrated mobile devices and other wireless technologies. Topic areas include: Remote Data Collection & Patient Monitoring (assess/track health in the real world) Health Disparities & Underserved Populations (high-risk and difficult to reach groups) Disease Prevention & Health Promotion (reducing risk factors for disease) Medical Compliance & Adherence (following treatment regimen) Environmental Exposure Assessment (studying environmental causes of disease) Childhood Obesity (energy intake and expenditure in individuals) Maternal, Newborn and Child Health (prenatal and postpartum health) Infectious Diseases (diseases attributed to virus, bacteria, or other infections) Patient Reported Outcomes (quality of life and other patient-driven health indicators) Point of Care Diagnostics (diagnostic testing performed at or near patient care setting) Educational Tools for Health Professional Training Software System Development and Information Technology Infrastructure (enterprise architecture) Emergency or Urgent Care (medical care where threat of disability or death is imminent) All submissions will be reviewed by the mHealth Summit steering committee. Oral presentations will be grouped thematically in tracks, presented as moderated sessions, and are expected to last 12 minutes with additional time for a Q&A session. Some presentations will be integrated into planned super sessions. To submit an abstract or for more information, please visit http://fnih.omnicms.com/fnih/mHealth10/collection.cgi Discounted registration for the mHealth Summit is available through September 24. Register today athttp://www.mHealthsummit.org

David Kibbe on NHIN Direct

Rich Elmore's Health Information Technology blog has a particularly useful overview of NHIN Direct by David Kibbe. For those of us more interested in how to use Health Information than in how to build networks, this article will provide a useful introduction. Nice work!

Vermedx, Inc. is seeking a new CEO

This exciting healthcare technology start-up provides state-of-the-art decision support services to patients with diabetes and their physicians. The technology has been proven in clinical trials to generate large first year returns on investment for insurers, providers at risk for utilization expenses, and self-insured employers. The company has 6 employees and serves thousands of patients across the country from its headquarters in Burlington, Vermont. The new CEO will need to improve sales, lead efforts to raise more capital, and support the development of new products and services.

Job Description and Requirements

Position: Chief Executive Officer

Reports to: The Board of Directors

Key Responsibilities

• Identify, develop and direct business strategy in cooperation with the Board of Directors
• Plan and direct the organization’s activities to achieve the Board’s targets and standards for customer satisfaction, financial performance, quality, culture, and regulatory adherence
• Manage the executive team
• Maintain and develop the organizational culture, values and reputation of the company in its markets and with all staff, customers, suppliers, partners and regulatory/official bodies
• Direct the sales activity to meet or exceed requirements for revenue growth
• Lead the company’s efforts to secure additional outside financing through equity, debt or other arrangements as approved by the board of directors
• Identify and develop strategic relationships that will accelerate attainment of company goals
• Collaborate with the Chief Operating Officer, Chief Medical Officer, and Chief Technology Officer on the evolution of the Company’s products, technology, and business model.

Other Responsibilities

• Serve on the Board of Directors, provide them with information needed to fulfill its responsibilities to stakeholders, and propose actions to the Board that support Company objectives.
• Represent the Company in a manner that reflects favorably upon it.
• Report to the shareholders and board on organizational plans and performance
• Provide active personal support to the Sales team in gaining access to qualified customer prospects and closing sales.
• Actively engage in and represent the company at Conferences and other events
• Manage financial operations, with appropriate support from the Company’s accountants

Professional Qualifications

• Prior successful experience in running either a successful for-profit company or a profit center of an established company in the healthcare Provider, Payer, or Information Technology sectors.
• High level contacts in one or more of the Company’s target markets.
• Strong practical knowledge of the role and functional aspects of chronic disease decision support technology in clinical settings.
• Ability to work successfully with medical, IT, operations, and business professionals.
• Experience in raising investment capital.

Compensation

• A combination of salary and equity to be determined.
• Compensation will depend on the CEO’s impact on increasing the market valuation of the Company.

To apply, please send a letter and resume to
Benjamin Littenberg, MD
benjamin.littenberg@vermedx.com
www.Vermedx.com

Brookings Institution Weighs in on Information Exchange

It was my honor and pleasure to serve on a panel convened by the Brookings Institution that discussed ways to better take advantage of laboratory data in diabetes. We discussed a lot of interesting ideas and made some suggestions on how to overcome the various barriers (legal, social, political, technical and psychological) that stand between the data and improved patient services.  Here is the announcement of the report's release:

Expert Panel Recommendations: Lab Data Integration for Diabetes Care Improvement

Integrating lab results with other sources of data, such as claims and other contextual, clinical patient health information, has the potential to significantly increase the data’s usefulness with regard to decision-support and care management improvement, and performance and population health management. The Engelberg Center convened a panel of key stakeholder experts – representing physicians, payers, health IT vendors, laboratory vendors, policy makers, regulators, and academics – to develop recommendations for overcoming key barriers and challenges to the collection and integration of electronic lab data through practical and replicable solutions. Read the panel’s full report.

Some of the most influential healthcare executives are all about information exchange

Can a top 50 list tell us something about the role of information exchange in healthcare?  Modern Healthcare's list of the most influential physician executives shows the growing importance of informatics. Although mostly filled with CMOs and CEOs of big healthcare providers and professional associations, the top spot is held by David Blumenthal, National Coordinator for Health Information Technology at HHS. Then there's a sprinkling of informaticians and information exchange advocates such as Donald Berwick, President of the Institute for Healthcare Improvement and a driving force behind the movement to make health information more transparent to patients, and Paul Tang, Vice President and chief medical information officer the Palo Alto Medical Foundation.Other awardees certainly get it such as Robert Wachter, Chief of the division of hospital medicine at UCSF and healthcare quality expert and blogger, Carolyn Clancy Director of the US Agency for Healthcare Research and Quality, and Thomas Frieden, Director of the US Centers for Disease Control and Prevention and originator of the first municipal diabetes registry in the world when he was Commissioner of Health for New York City.

With friends in high places, maybe we can get some progress in using all those bits of data to help people live better!

Is Health IT Worth it?

Congratulations to Colene Byrne, Blackford Middleton and their colleagues for a fine paper in Health Affairs about The Value from Investments in Health Information Technology at the U.S. Department of Veterans Affairs.  They calculated that the VA has saved over $3 billion from their investments in VISTA and other IT. By investing more (and perhaps more wisely) than private sector, the government has achieved efficiencies that the big corporations delivering health care haven't been able to find yet. I take that as cause for optimism.

EMRs for Care Coordination

One of the really good reasons to use an Electronic Medical Record (EMR) is that it helps to coordinate care among the various providers working on a single case. This is certainly one of the points that has been used to sell EMRs and to justify the huge upcoming federal investment in them. But, do they really work?

Ann O'Malley and a team from The Center for Studying Health System Change interviewed 60 users from 26 practices across the country and asked them how their commercial EMR fared in supporting coordination of care. The found some good news: EMR users reported that in-office coordination was improved. However, they also found some bad news: EMRs are not so good at the much more difficult task of coordinating care across offices (as when the Primary Care Provider refers to a specialist across town). The full report is in the March 2010 issue of the Journal of General Internal Medicine. You can see the abstract here.)

To squeeze the real value out of EMRs, we're going to need new approaches to Health Information Exchange. The EMR is a multi-purpose tool, but it will need some different kinds of features if it is to improve care the way some single-purpose tools (like Vermedx) do.

The Internet and Chronic Disease

The good folks at the Pew Research Center have produced another excellent report. This one is on the relationship between access to the Internet and having a chronic disease. No, its not another "The Internet is destroying everything noble" story. Rather, maybe we need even more Internet.

"U.S. adults living with chronic disease are significantly less likely than healthy adults to have access to the internet (62% vs. 81%). The internet access gap creates an online health information gap. However, lack of internet access, not lack of interest in the topic, is the primary reason for the difference. Once online, having a chronic disease increases the probability that someone will take advantage of social media to share what they know and learn from their peers."

Why is this? One reason (suggested by John Robitscher of the the National Association of Chronic Disease Directors) is that chronic diseases are more likely in poor people who also have a lower liklihood of Internet access. However, even if poverty is a confounder, the benfits of access to health information may be least likely to go where they are needed the most.

See the full report from Pew here.

Exchanging Data in Other Settings

It's not personal health data, but here is a very interesting take on the power of sharing information by Tim Berners-Lee, the wizard behind the Internet: http://www.ted.com/talks/tim_berners_lee_the_year_open_data_went_worldwide.html

The use of Open Source Wiki Mapping to help rescue workers in Haiti is brilliant!  How can we use this approach in Health Care?

Do Computetized Decision Support Systems Work?

How should decision support be delivered to doctors and other providers? Very simple supports, like "don't forget to do a mammogram in this 55 year-old woman," or "CT scans of the brain aren't very useful in patients without specific findings on neurologic exam" can be delivered a variety of ways - on paper or via order entry systems, or even as standing orders that require no provider input. 

But lots of medical problems are more complex. Managing chronic disease or polypharmacy or multiple diagnoses calls for multidimensional reasoning and is a notoriously difficult task for humans to master. It seems like a great opportunity for computerized decision support. One vision is that the provider interacts in real time with a computer screen that solicits inputs, provide advice, and encourages best practices. This kind of support is one of the big arguments in favor of electronic medical records. But, does it work?

This week, a new systematic review was published that examined the effectiveness of such multidimensional, real-time decision support systems in outpatient care. The results are not heartening. The authors reviewed 27 comparative studies. Less than half showed some benefits in terms of improved process measures (documentation, adherence to recommendations, etc.), but there was very little evidence that patient outcomes improved.

They conclude that

"There is little evidence at the moment for the effectiveness of an increasingly used and
commercialised instrument such as electronic multidimensional guidelines."

Why didn't they work?  It's not entirely clear, but possible reasons include bad interface design, poor integration into work flow, overwhelming volumes of feedback, hardware failures, and tedious data entry requirements. Of note, these systems generally did not involve the patient in the decision support interaction, which may be key to getting improved outcomes.


You can see all the details here:
Effectiveness of electronic guideline-based implementation systems in ambulatory care settings - a systematic review
Heselmans A, Van de Velde S, Donceel P, Aertgeerts B, Ramaekers D
Implementation Science 2009, 4:82 (30 December 2009)
[Abstract] [Provisional PDF]