EHR Usability Is A Really Significant and Important Issue. Interesting Stuff Here!

The following appeared in the New York Times a little while ago.

July 16, 2011

Seeing Promise and Peril in Digital Records

By STEVE LOHR

TECHNICAL standards may seem arcane, but they are often powerful tools of economic development and social welfare. They can be essential building blocks for innovation and new industries. The basic software standards for the Web are striking proof.

Safety is also a potent argument for standards. History abounds with telling examples, like the Baltimore fire of 1904. That inferno blazed for 30 hours, destroying more than 1,500 buildings across 70 city blocks. Fire engines from other cities came to help, but could not. Their hose couplings — each a different size — did not fit the Baltimore fire hydrants. Until then, cities saw little reason to adopt a standard size coupling, and local equipment manufacturers did not want competition. So competing interests undermined the usefulness of, and investment in, the technology of the day.

Today, the matter of standards for electronic health records is raising similar concerns, prompting heated debate in recent meetings of representatives from medicine, industry, academia and government. The stakes, they say, could scarcely be higher. They agree that, when well designed and wisely used, digital records can deliver the power of better information to medicine, improving care and curbing costs. But computer forms, they add, can also be difficult to use, cluttered and distracting, causing more harm than good in health care.

“This is an issue that potentially affects the health and safety of every American,” says Ben Shneiderman, a computer scientist at the University of Maryland.

The controversy points to the delicate balancing of interests involved when creating technical standards that inherently limit some design choices yet try to keep the door open to innovation. It also raises the question of the appropriate role for government in devising such technology requirements.

At issue is the Obama administration’s plan to develop standards to measure how effective and easy digital patient records are to use — applying a research discipline known as human-computer interaction or human factors. (The International Organization for Standardization, which is based in Geneva, defines the usability of a product by three attributes: “effectiveness, efficiency and satisfaction.”)

The need to improve the usability of computerized records is clearly evident — and has been for some time. A 2009 study by the National Research Council, an arm of the National Academy of Sciences, found that electronic health record systems were often poorly designed, and so could “increase the chance of error, add to rather than reduce work flow, and compound the frustrations doing the required tasks.”

At a government-sponsored gathering last month, Dr. David Brick, a pediatric cardiologist in New York, demonstrated how it took eight mouse clicks on a digital record to find the patient information presented comfortably on the single sheet of a paper chart. Hearing such complaints, countless times, from doctors and nurses is what prompted the administration to put usability on its policy agenda.

.....

What is also beyond doubt is that the promise of digital records will be unfulfilled if doctors refuse to adopt them, because they regard the technology as cumbersome, time-consuming and possibly dangerous.

“Usability is going to be the single greatest impediment to physician acceptance,” says Dr. Edward H. Shortliffe, a professor at the University of Texas Health Science Center in Houston and the president of the American Medical Informatics Association.

Lots More here:

http://www.nytimes.com/2011/07/17/technology/assessing-the-effect-of-standards-in-digital-health-records-on-innovation.html?_r=2

This article raises a really important issue. How do you make software work well, be suitable to the needs and at the same time be safe and not get in the way of clinicians trying to get the job done,

My view is that there is a difficult line to draw. We need practitioner systems that work well, are easy to use and foster safe practice but at the same time over regulation might ensure the incentive to create such systems is blunted.

Well worth a read. I would love views from software developers etc.

David.

Twitter Moves Into The E-Health Domain. What A Fascinating Outcome!

The following appeared week or two.

http://healthcareitnews.com/news/scientists-track-health-issues-twitter

Scientists track health trends on Twitter

July 08, 2011 | Molly Merrill, Associate Editor

BALTIMORE – Twitter can be used to track important health trends, according to computer scientists at Johns Hopkins University.

Mark Dredze and Michael J. Paul fed two billion public tweets posted between May 2009 and October 2010 into computers, then used software to filter out the 1.5 million messages that referred to health matters. Dredze, a researcher at the university’s Human Language Technology Center of Excellence and an assistant research professor of computer science, and Paul, a doctoral student, said identities of the tweeters were not collected.

“Our goal was to find out whether Twitter posts could be a useful source of public health information," said Dredze. “We determined that indeed, they could. In some cases, we probably learned some things that even the tweeters’ doctors were not aware of, like which over-the-counter medicines the posters were using to treat their symptoms at home.”

By sorting these health-related tweets into electronic “piles,” Dredze and Paul uncovered patterns about allergies, flu cases, insomnia, cancer, obesity, depression, pain and other ailments. “There have been some narrow studies using Twitter posts, for example, to track the flu,” said Dredze. “But to our knowledge, no one has ever used tweets to look at as many health issues as we did.”

In addition to finding a range of health ailments in Twitter posts, the researchers were able to record many of the medications that ill tweeters consumed, thanks to posts such as: “Had to pop a Benadryl … allergies are the worst.”

Other tweets pointed to misuse of medicine. “We found that some people tweeted that they were taking antibiotics for the flu,” said Paul. “But antibiotics don’t work on the flu, which is a virus, and this practice could contribute to the growing antibiotic resistance problems. So these tweets showed us that some serious medical misperceptions exist out there.”

To find the health-related posts among the billions of messages in their original pool, the Johns Hopkins researchers applied a filtering and categorization system they devised. With this tool, computers can be taught to disregard phrases that do not really relate to one’s health, even though they contain a word commonly used in a health context.

Once the unrelated tweets were removed, the remaining results provided some surprising findings. “When we started, I didn’t even know if people talked about allergies on Twitter,” said Paul. “But we found out that they do. And there was one thing I didn’t expect: The system found two different types of allergies – the type that causes sniffling and sneezing and the kind that causes skin rashes and hives.”

In about 200,000 of the health-related tweets, the researchers were able to draw on user-provided public information to identify the geographic state from which the message was sent. That allowed them to track some trends by time and place, such as when the allergy and flu seasons peaked in various parts of the country. “We were able to see from the tweets that the allergy season started earlier in the warmer states and later in the Midwest and the Northeast,” said Dredze.

More here:

http://healthcareitnews.com/news/scientists-track-health-issues-twitter

First it was Google tracking epidemics based on what was searched for and now we have Twitter offering at least some useful information in the quest to understand patterns of symptom and disease spread.

Talk about an ‘unintended outcome’!

David.

Do You Agree With the Perspective Provided Here On Patient Information Access?

The following appeared a few days ago and I thought it was worth putting up for discussion.

Healthcare Needs Help On Transparency

The industry will need to get over its skittishness about sharing electronic health records with patients. Because patients will demand full access to their digital records, plain and simple.

By Chris Murphy, InformationWeek

July 14, 2011

Dr. Neil Calman wrapped up Tuesday's InformationWeek Healthcare IT Leadership Forum in New York City with a few predictions, including one portending radical change in people’s access to their health records.

He started with the big picture. "If there's one thing that's going to revolutionize healthcare--whether it's IT, ACOs, any aspect of health reform--what you're going to see is patients taking back healthcare from their providers," said Dr. Calman, a physician who is CEO and cofounder of the Institute for Family Health, which runs 17 health centers in the Bronx, Manhattan, and the mid-Hudson Valley in New York State.

Then Dr. Calman got more specific, including one prediction destined to raise some blood pressure:

"You're going to see patients want complete and unfettered access to their medical records. Forget all this about where we're going to keep the data to ourselves for seven days before it's released to patients, or we're going to create models of abstracted data to give to people. They will have total and complete, instant access to their medical information, whenever, in multiple formats, however they want it."

Each of those modifiers -- complete, unfettered, instant -- would rip away a security blanket that healthcare providers and health IT leaders cling to when they start talking about giving patients access to their medical records.

Instant: Some providers give patients access to lab results, but they wait several days so that doctors have time to talk with their patients about the results.

Complete: Should patients be allowed to read their doctors’ notes? To access every lab result? To see images they aren't qualified to assess?

Unfettered: This will mean letting patients have their full health records -- and not just through a hospital's sanitized portal, but as a raw download they can take with them, Dr. Calman predicted. And they'll have to offer a means for the patient to make comments, or corrections in places where they think the information is wrong, he said. Dr. Calman's fellow panelist, Karen Marhefka, associate CIO for UMass Memorial Healthcare, said giving patients the ability to comment on records was a concern when UMass Memorial assessed vendors for its planned patient portal. Its lawyers advised against allowing other sources into the providers' clinical data, even if comments could be identified as coming from the patient.

Dr. Calman predicted that every major electronic health record system or portal will soon allow patient input, and that it shouldn't be controversial. "Every single thing we do in medicine depends on what the patient told us," he said. "… The subjective part of every progress note is us writing down what the patient told us. We don't have any way of independently verifying it. But all of a sudden, when the patient can write it themselves, it becomes something the lawyers are all freaked out about. Anyway, these are the transformations that are going to take place. They just change the way we think about everything in healthcare."

More here:

URL: http://www.informationweek.com/news/global-cio/interviews/231001847

My feeling is that this position is at rather the ‘bleeding edge’ but that there will emerge over the next few years a reasonable number of consumers who would agree with this view. Whether there are enough people who, if such a service were available, would actually use it we will have to just wait and see. The adoption of PHRs makes one wonder but on the other hand the importance for many people to keep track of their clinical story and their preparedness of some to do the work argues against that.

My view is that we should see if offering a service attracts a reasonable amount of use in a confined geography (say one capital city or those insured by one provider) and if there is substantial interest and use then go from there.

There does often seem to be a tendency to want access to material on the part of the public, but once granted a good deal of the interest wanes. Testing is the only way to know.

David.

A Clearly Written And Useful Review of Medical Record Privacy. It Is Not Utterly Straightforward!

This useful article appeared a little while ago.

An unhealthy obsession

Beth Wilson

July 18, 2011

Opinion

Britain's media scandal is a timely reminder that medical records are sacrosanct.

WHY is health privacy so important to people? Britons are reportedly shocked by the invasion of former prime minister Gordon Brown's privacy when his son's health information was allegedly ''blagged'' and published. The Sun has denied accessing the family's medical records without consent and says the story came from a member of the public whose own son has cystic fibrosis and who merely wanted to raise awareness. The Cystic Fibrosis Trust, correctly in my opinion, questioned the decision to publish the information regardless of motivation, saying: ''The release of any medical information to the media or anyone else is a decision for patients or, in the case of children, their parents to make.''

In Victoria we have two separate laws governing information privacy, the Information Privacy Act and the Health Records Act. These laws work concurrently. The Information Privacy Act is administered by the Privacy Commissioner and protects information in the public sector and the Health Records Act is administered by the Health Services Commissioner and protects health information.

When the legislation was passed, the Parliament of the day took the view that our health information is different from other information because it can be extremely sensitive, intimate and prone to misuse for discriminatory purposes. People should be able to reveal intimate details to their health service providers and other organisations trusting their confidentiality will be respected.

Health records are owned by the doctor who created them or to the organisation they work for depending on the contractual agreement, but people do have a legal right to get copies of or inspect records which contain their health information. Organisations that collect our health information must ensure the information is secure, up to date and accurate and is not disclosed without the consent of the person it is about.

It is also important that health information is disposed of securely. In one disturbing case, my office had reports of medical records containing people's names and revealing HIV and hepatitis C status found blowing in the wind in a supermarket car park. A doctor who had taken the files home nipped into the supermarket on the way home. His children thought the records would make good paper planes, and so they did. The hospital is now much more careful about protecting the security of the sensitive information of which it is the custodian.

Many people also don't realise that the media are exempt from privacy laws in connection with their news activities. Privacy is not absolute and there is a balancing act between making sure the right information gets to the right people at the right time, hence the importance of press freedom. The public has a right to be told what is going on in government and society and accountability is, in some cases, more important than individual rights to privacy.

While the media are exempt from privacy laws, they have a corresponding ethical obligation to treat people's health information sensitively. The media are not exempt from receiving information unlawfully. Privacy is a legal concept whereas confidentiality is an ethical obligation which involves making moral judgments. This has been the case at least since the 5th century BC, when Hippocrates included in his Oath: ''All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.''

More here:

http://www.smh.com.au/opinion/contributors/an-unhealthy-obsession-20110717-1hk0t.html

Beth Wilson is the Health Services Commissioner for Victoria.

Ms Wilson rightly notes that there is no real protection for health information if it is disclosed maliciously or for profit as we lack legal protections against public disclosure by media. This really is not a satisfactory situation with respect to private health information - and the only legitimate disclosure I see is that based on direct consent from an individual (e.g. a politician admitting and disclosing treatment for depression etc.).

While Ms Wilson did not mention it, I believe politicians are also exempt from the Privacy Act as are some Small Businesses and Employee Records held by an employer (for reasons I don’t understand).

There was a review of the Privacy Act in 2008. You can read all about it here:

http://www.alrc.gov.au/publications/report-108

There is a lot on EHRs and Health Information but to date there has not been any real decisions taken in this area.

The following sections are the most relevant:

· 60. Regulatory Framework for Health Information

· 61. Electronic Health Information Systems

· 62. The Privacy Act and Health Information

· 63. Privacy (Health Information) Regulations

· 64. Research: Current Arrangements

· 65. Research: Recommendations for Reform

· 66. Research: Databases and Data Linkage

There is also more information here:

http://www.privacy.gov.au/business/health

The impression one gets looking at these various sources is that we still have a regulatory patchwork (for example State Government Health Facilities are exempt from the Commonwealth Privacy Act) and that with the plans for the PCEHR seemingly steaming ahead a nationally consistent and agreed set of laws and regulations is vital.

It is interesting that the Government has announced some interest in a review of Media and Privacy some three years after the Law Reform Commission recommended a statutory right to privacy be created. Maybe Health Information Privacy could have a similar kick along!

Those who are interested may wish to visit here:

http://www.yourhealth.gov.au/internet/yourhealth/publishing.nsf/Content/pcehr-legals

and provide their view on the proposed legal framework for the PCEHR (Submissions close August 3^rd, 2011.)

The bottom line to all this unless we have a complete and clear privacy framework that is formally agreed by all major stakeholders we will really doom the PCEHR or anything similar.

It seems to me there are formidable obstacles in getting to that state with differing approaches in a number of the States and the Commonwealth yet to really declare its full hand - and legislate it - on Health Information Privacy and protection.

Have a look here to see the proportion of the US public that are really worried about their health information privacy.

http://www.fierceemr.com/story/your-emr-privacy-policy-first-and-foremost-should-be-practical/2011-07-20

I would expect a similar breakdown in Australia at a slightly lower level.

David.

The Clinical Document That Can Really Make A Difference - We Need To Be Sharing Them Electronically More Often!

This is a draft article for a magazine - comments and suggestions welcome!

-----

At its core e-Health is, as most will agree, trying to use technology in a way that best facilitates the flow of information between the various actors in the Health System, be they consumers, care providers or information sources such as pathology labs etc.

It is often said that a key goal of e-Health is to get the right information to the right person at the right time in the hope that the decisions made when in possession of all the facts will be the best possible. Good provider systems and secure clinical messaging can achieve this outcome.

For practical reasons, and maybe a lack of imagination, most e-health services and applications aim to replicate, to a greater or lesser degree, the presentation of information to the practitioner in the familiar way of looking in as many ways as possible like the paper records that they are replacing. To this end we have electronic replications of all sorts of documents such as referrals, prescriptions, clinical results and so on.

At its simplest level e-Health undertakes the pretty basic tasks of preparing, managing, organising storing and communicating these clinical documents. In this basic context I want to suggest that there is one document which we see not enough sharing of and which to my mind is greatly undervalued. That document is the specialist letter the specialist writes back to the referring GP when the patient has been seen, assessed, investigated and treatment initiated or updated.

Before discussing why I think the specialist letter is so important it is necessary to point out that I in no way minimise the difficulties that may arise in having successful sharing of detailed clinical information, however I would point out that of all the shareable documents the specialist letter may be the simplest to share successfully, being essentially just a header and a test file typically.

The reasons I especially highlight the importance of the specialist letter are as follows.

First, such correspondence is created in a calm, unhurried and focussed environment where there is time to give careful thought to what is being planned and said. Inevitably this maximises the quality, value and trustworthiness of the document.

Second, especially if created by a consulting physician, it will typically have a very clear statement of the patient’s clinical history, previous major health issues, present therapy and so on as well as the reason for the present review and the associated conclusions and recommendations.

Third these days the document will virtually always be created in electronic form making it very straightforward for it to be provided in a very accessible form to a clinical messaging client that can then provide the appropriate security and encryption prior to the letter going directly to the referring clinician.

Fourth, from my experience in both Critical Care and Emergency Care situations, I found these letters to be the single most useful paper document contained in a record and always made a practice of looking for such documents before beginning work assessing the other more detailed components of the record. Indeed, a recent well considered specialist letter was often able greatly speed up the assessment and treatment process in the emergent situation.

A single caveat I would put on all this is that, as the communication back to the GP is critically important so is the effort put in by the GP in developing a referral that explains clearly what is needed from the consultant and provides as much current relevant information as possible.

The National E-Health Strategy, developed for the Council of Australian Governments in 2008 and agreed that same year by COAG, laid out a range of priorities of National E-Health initiatives. The highest priorities were to improve the quality and usage of the IT systems used by providers and to improve clinician to clinician communications via secure messaging. It was also felt that these steps and the creation of appropriate e-health infrastructure (terminologies, health identifiers etc.) offered the best platform from which to then evolve into more advanced e-Health applications such as shared Electronic Health Records.

In both these two top areas there has been steady progress with a range of GP system providers gradually improving the quality and usability of their offerings and the emergence of a number of secure clinical messaging providers who now have very considerable geographic reach and are able to facilitate effective document exchange. Interestingly, very little of this progress can be attributed, at least so far, to NEHTA or the Commonwealth Department of Health who, despite claims to the contrary, have not funded the National Strategy and have proceeded to commence work on the Personally Controlled Electronic Health Record (PCEHR) and telehealth initiatives (involving a total expenditure of close to a billion dollars) which were not mentioned as top priorities in the Strategy. Additionally, while NEHTA has done considerable work on developing e-referral specifications, there is little apparent emphasis on ‘closing the loop’ with the return specialist letter.

The specialist clinical letter is, in my view, a much undervalued document where electronic clinical exchange could be quickly enhanced using services already in existence and at very low cost. I know many GPs are already getting such a service from many specialists but a concerted push to improve the level of penetration would be a very good thing - and would allow for incremental improvements in care while we all await the delivery of some useful e-Health applications from NEHTA and DoHA.

Adopting this suggestion can make a real difference, real soon!

-----

David.

A Site For Experts To Review and Comment on CDA and Information Content Packaging.

I have been asked to provide a link to this questionnaire.

Here it is:

http://www.healthintersections.com.au/?p=418

It will assist NEHTA and a range of others:

Here is the start of the blog:

Straw Poll: Choice of a CDA packaging specification

July 27, 2011 CDA / NEHTA

One of the more difficult issues facing the NEHTA CTI team is what to choose for a technical CDA packaging strategy. We need a coherent strategy because CDA documents have assorted attachments. These attachments can include things like:

• Images
• Alternative document format representations (such as pdf / rtf)
• Digital Signatures

The CDA specification itself says (section 3) that when a CDA document is transferred from one place to another, all components of a CDA document must be able to be included in a single exchange package, including if the transfer is across a firewall, and that there is no need to change any of the references in the CDA document.

----- End Extract.

If this is your expertise please respond.

David.

Here Is How PHRs Are Evolving It Would Seem - Not What We Are Planning with the PCEHR.

Dossia, who are one of the oldest PHR providers in the US are moving on in some very interesting ways.

First see here:

When Social Features Meet Personal Health Records

Employer consortium Dossia takes cues from social networking and games as it vies to boost usage of its personal health record site.

By Marianne Kolbasuk McGee, InformationWeek

July 20, 2011

URL: http://www.informationweek.com/news/healthcare/EMR/231002035

Employer consortium Dossia is adding new functionality to its personal e-health record system to improve engagement with users and help them better manage and improve their health.

The new Dossia Health Manager is an "intelligent" health management system that further extends Dossia's original e-personal health record capabilities beyond being a platform for individuals to store and track their health information to one that enables users' health data to become "actionable," said Dossia CEO Mike Critelli, in an interview with InformationWeek Healthcare.

The new system integrates game and social networking dynamics, incentives, and messaging in an effort to foster "sustained user engagement and behavior change," he said.

Dossia is increasingly migrating away from being "a pure health record system" to an intelligent platform with tools and applications to help employees better manage not only their health data, but their health, he said.

"We realized about 2-1/2 years ago that people want more than information, but tools to organize and act on the information," he said.

"We've been recognizing that self-insured companies have been asking for a return on investment" for the wellness and other programs they've been offering employees in hopes of reducing healthcare costs, he said. While employers often do a lot of discretionary spending on employee health risk assessments, wellness and prevention programs, and health coaching for employees, especially those with chronic illnesses, getting employees to regularly partake in healthy behavior promoted by these programs can be difficult. Also, employees often don't take advantage of these employer-sponsored programs.

The new platform can help nudge Dossia users to do so with reminders, and game-like activities to get them more engaged in tracking their health, whether it's a hypertension patient remembering to take daily blood pressure readings or a parent keeping on schedule with kids' immunizations, he said.

While employers do not have access to workers' Dossia health data, employers' health plans do process claims data that can indicate whether a patient is keeping up with refills for prescriptions to treat chronic conditions, and whether a patient is going to the doctor for recommended services. The Dossia platform can help employers and health plans devise benefit packages that incentivize healthy behavior, he said.

Based on information in an individual's Dossia health record data, the system can offer customized applications, such as tools and content geared to a person's chronic condition. For instance, if a patient is diagnosed as obese or pre-diabetic, the Dossia system may suggest recipes and health tips geared at helping the patient better control diet and weight as well as other factors that could help decrease the risk of actually developing diabetes or other medical complications.

Link to more is the text.

New Features for Dossia Employer-Sponsored PHR

Joseph Goedert

HDM Breaking News, July 20, 2011

Dossia, a Cambridge, Mass.-based personal health records vendor targeting large employers, has several new features in a next-generation version of the software.

The new version, called Dossia Health Manager, offers teleconsultation services with a physician within 30 minutes who can pull up a consumer's PHR and add to it during the consult. Employers will subsidize the service with varying consumer out-of-pocket costs depending on their benefit plan.

Much more here:

http://www.healthdatamanagement.com/news/dossia-phr-personal-health-records-42820-1.html

What we are seeing here are the Web 2.0 implementation of the PHR with clear health goals and outcomes defined and much more interactivity than even vaguely imagined with the PCEHR Concept of Operations.

All this just makes it clear just how unimaginative and flat-footed NEHTA has been in the design of the proposed PCEHR. Where exactly can one find the roadmap that explores the main ideas here (and yes I know they plan a patient note taking facility and adding a few more document types)?

If we are to have this monster thrust upon us then there seem to be some really interesting ideas which have simply not been considered. Pity that!

David.

Small Comment On Attempted Link Insertion and Spamming Of The Blog.

Hello to the jerks trying this!

Just so you know that if a post even has the least odour of spam or attempted link insertion on the blog for your commercial gain it will just not be posted.

Simple and painless for me - and you - idiot that you must be - are wasting your time!

Back to normal service. Why do jerks like this exist I wonder?

David.