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.