Wednesday, June 22, 2011

Now I Wonder Where We Are on Solving This Major Issue? We Need A Published Plan I Think!

This popped up a few days ago.

Preserving EHRs: Time to Worry?

Elizabeth Gardner

Health Data Management Magazine, 06/01/2011

With meaningful use taking up all the top slots on the national EHR to-do list, record retention and preservation don't even make the first page: Data storage is so cheap, so the popular thinking seems to be, we'll just keep everything and worry about it later. But Milton Corn, M.D., deputy director for research and education at the National Library of Medicine, thinks we should worry about it now.

He's been worrying about it since shortly after the American Recovery and Reinvestment Act allocated billions of dollars for EHRs and he first began to consider the torrents of electronic medical data that will result.

What should be kept? For how long? What storage methods should be used, and will they be vulnerable to technological obsolescence?

How can we ensure that the trove of information locked in the records can be analyzed by researchers without compromising patient privacy?

"I think it's a rich issue and the discussion has just gotten started," Corn says. "I would like it if every hospital and physician's office started giving some thought to what they're going to do."

To that end, he organized a workshop in April, held at the NLM and co-sponsored by the National Institute for Standards and Technology, the Department of Veterans Affairs, and the National Archives and Records Administration.

It attracted more than 90 attendees and identified some basic issues that all providers will have to deal with eventually. (See sidebar, below)

"Our data will change formats and media many times," says Mark Frisse, M.D., professor of biomedical informatics at Vanderbilt University, who spoke at the workshop. "The question is, what's the cost of ownership and what is its real value? Do we need data on every American, or is it better to have really intensive data on 500 people or 1,000? Archivists must make these decisions in the here and now."

Legally, medical record retention requirements haven't changed with the advent of EHRs, and few EHR users have had their systems long enough for the records to have aged beyond statutory limits.

Idiosyncratic

Each state has its own idiosyncratic requirements, often mirroring its statute of limitations for filing malpractice claims. Tennessee requires records to be retained for 10 years after the last patient contact, Virginia for six.

North Carolina has a retention requirement of 11 years for hospitals but none for physician offices. Colorado requires pediatric records to be retained for 10 years after the patient reaches the age of majority.

Heaps more here:

http://www.healthdatamanagement.com/issues/19_6/preserving-electronic-health-records-42539-1.html

It is by no means clear to me how this issue can be addressed - especially in the context of the expectation of having life-long records that may need to last up to 100 years from their initial entries - or even more!

I don’t know about you but I still have a heap of Wordstar and Word Perfect files that the only way I can access is via a multi-file viewer and the oldest of these only goes back say 20 years.

Of course all the 8 and 5 inch floppies are pretty much useless as well.

As far as atomic data that may the held in current clinical systems - without planning and I suspect some major regulation - what chance do you think there is that they will be accessible in 20 years in any useful form - let alone 40 or 50 years!

And if you want a tricky one - think how you might archive an electronic electrocardiograph or other biological signal record for posterity?

I somehow suspect this won’t get sorted out until such time that some important clinical records become unreadable and the lawyers get involved on behalf of the patient.

Anyone have a plan?

In the US I see the National Library of Medicine is giving the issue some thought.

Archiving the Phenome: Clinical Records Deserve Long-term Preservation

Milton Corn, MD

National Library of Medicine, National Institutes of Health, Bethesda, MD

Correspondence: Dr. Milton Corn, 6705 Rockledge Drive, Suite 301, Bethesda, MD 20892 (Email: cornm@mail.nih.gov).

Received July 15, 2008; Accepted September 23, 2008.

Full text is available here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2605592/

With the PCEHR (or whatever happens next) this issue will need to be addressed up front - and not discovered to be an issue later!

I look forward to the NEHTA producing the appropriate plans.

I note the National Library of Australia has also been thinking in the broad about the issue.

See here:

http://www.nla.gov.au/openpublish/index.php/nlasp/article/viewArticle/1333/1619

Another party that has been thinking about document archiving is, not surprisingly, Adobe.

See here for information about the PDF/A Standard which is a 2005 ISO standard that some governments have adopted.

Enjoy thinking about it!

David.

4 comments:

Anonymous said...

Despite popular belief that "Health is Different" with respect to everything ITC-related, in this instance, fortunately NOT as "Information Lifecycle Management" (ILM) is the known solution to this problem space and may be readily -- although arguable too expensively -- thrown at this information archival, retrieval, retention and disposal problem, all-encompassing of technological and media obsolescence, with security and information integrity maintained and catered for.

And as Libraries digitising their content around the globe know all too well, even for over a 100 year period.

You can trust that NEHTA are on the ball here!

Anonymous said...

Ah .... why strain the brain with such complexities until at least one basic ubiquitous useful everyday application is deployed and working? If we can't prove the first step how can we prove the second?

Anonymous said...

In response to Anon's 10:28:00 AM very sage like comment I am compelled to ask - What is the first step and how can we prove it?

Dr David More MB, PhD, FACHI said...

"You can trust that NEHTA are on the ball here!"

And the evidence for this assertion is?

David.