Sharing imaging results online with patients: Data from Group Health Cooperative

This post is a tad bit belated (compared to when I received the information, not compared to health care having this experience, it’s way ahead of it’s time there), however I think the data is useful. Now that Group Health Cooperative (@GroupHealth) has been sharing imaging results online with patents for about 15 months now (See: What Group Health Physicians are saying about sharing imaging test results with patients – 1 year later | Ted Eytan, MD), the question came up:

What percent of the studies that are shared online with patients are actually read online by patients?

This question is asked because if physicians are anxious/concerned about receiving more communication (email/phone/in person) about these studies and they know that they are mostly being read by patients and phone calls/emails are not going up, this is reassuring beyond the reassurance that patients are active participants in their care.

And the answer is: for patients who are registered for access to MyGroupHealth (about 62% currently), 2/3rds of results are read by the patient.

		% potentially
		viewed % reviewed
	CT  		53% 	67%
	Fluoro* 	76% 	92%
	MRI 		65% 	76%
	Nuc Med 	93% 	54%
	U/S 		65% 	64%
	PET* 	100% 	75%
	Total: 		64% 	69%
				
	X-Ray 		67% 	67%
	Mammo 		67% 	65%
	Dexa 		75% 	80%
	Total: 		67% 	67%
				
	Overall: 	66% 	67%

* Not enough volume to accurately judge

So, 62% of the adult membership of Group Health Cooperative is signed up to use the MyGroupHealth portal, of those who are signed up and have an imaging study, about 2/3rds go online to review the result. That’s impressive. Theoretical focus group studies have shown that patients want to know (see: Now Reading: Patients want their radiology test results | Ted Eytan, MD). This experience shows that the studies aren’t theory.

Thanks to John Kaschko, MD, for providing this information and allowing me to share it.

It’s been illegal in California since 2002 for a physician to give a woman her pap smear results online. AB-2253 would change that.

Way back in 2002, when I lived and worked in Washington, State, I heard about what I’d call a “quirky” little law known as California Health and Safety Code Section 123148, that did exactly as the title of this post reads.

It made it illegal for a physician to deliver certain test results to their patients online, secured, or not (“by Internet posting or any other means”). The tests included are pap smears, hepatitis tests, HIV tests, tests of drug abuse, all biopsies including skin biopsies or “routinely processed tissues” if they reveal a malignancy.

The law turned out to be more than little in that it prevented many patients from accessing their health data online, even when both the patient and the physician wanted it. Actually, it still prevents this access to this day, 10 years later.

Luckily for the patients in Washington State, such a law was never passed, and they reaped the benefits of involvement in their health care.

At the time, I heard varying reasons why this law was passed. One story is that it was the large clinical labs in the state that wanted these restrictions. Another version, that makes more sense, is that the State’s large medical societies wanted these restrictions.

I never wanted these restrictions as a physician, so if this story is correct, then I am being non-compliant (again) with my profession in advocating for this change.

10 years later, it’s clear that patients don’t want these restrictions either, and physicians engaging in patient centered, technologically-enabled care, could do without them as well.

California Assembly Bill AB-2253 has been introduced in the 2011-12 legislative session, is in play right now, and seeks to amend Section 123148 to make it less restrictive.

AB -2253 doesn’t go far enough, though, because the restrictions it leaves in place would still allow results to fall through the cracks and increase patient harm (See: Why Patients Should Have Access to Their Lab Results).

Take a look closely and see if section b(1) and section f need to exist anymore, or in what form they should continue to exist. Specifically, a patient friendly version of this statute should not require a physician to review results before they are seen by the patient (however physicians should be required to review the test and set forth a plan of action).

The best medical practice is to require a physician to talk about the results of a test when the test is ordered. This allows the patient to ask the right questions – “Why do I need this test? Have I gotten this test before? What are you looking for? How is this going to help my health/health care?” These are all the things that go through a doctor’s mind when they choose a test. If these things are not going through a doctor’s mind, then something is very wrong.

Before you say, “but Ted, new HIPAA and CLIA regs will solve this problem,” I direct you to section (d), second sentence:

However, any state statute, if enacted, that governs privacy and security of electronic personal health records, shall apply to test results under this section and shall prevail over federal law if federal law permits.

I’m not a lawyer and I’m not a legislator, so I invite further scrutiny, commentary, and the advice that AB 2253 is an opportunity, after 10 years, for California physicians to be there for their patients. What are your ideas, how can we make this happen?

Now Reading: Why patients need access to their lab test results – lack of timely follow-up even with an EHR

This paper is really called “Notification of Abnormal Lab Test Results in an Electronic Medical Record: Do Any Safety Concerns Remain?” and it answers the question handily about whether safety concerns remain:

Yes, lots.

For me it also answers the question: Should patients and families have access to their lab test results?

Yes, lots.

The authors reviewed 4 key lab test results (HbA1c, HCV, TSH, and PSA) with wildly high or very significant values for a 6 month period in an institution with a modern electronic health record (Department of Veterans Affairs). They wanted to see if the EHR’s ability to give physicians/clinicians high-priority alerts in their work flow resulted in timely follow-up of these abnormal results.

The answer is, as previous studies have shown, about a 7 % (6.8) rate of lack of timely follow-up on significantly abnormal test results.

And again, no mention of the patient

With the confirmation again that EHRs and clinicians are not infallible with regard to transmitting important information to their patients – why are we depending on them solely as the safety net?

I am a fan of the researchers who continue to produce this excellent work, however, I find the following statements in the article lacking insight about solutions to these problems, which are serious:

Abnormal result follow-up, however, will occur only if electronic communication of test results (either through alerts or direct access of test result) is reviewed and acted upon by providers.

Problem with the above: patients are not included. If providers act and patients do not, then follow-up has not happened. We’re not treating lab results, we’re treating people.

High-reliability tracking systems to monitor potential patient harm and outcomes are needed, which also should account for follow-up actions by providers.

Problem, again. Does patient and family access to their health data not add reliability, and shouldn’t they be involved in what harm and good outcomes are? They, patients and families, are not mentioned anywhere as a solution to this problem. This attitude contributes to a chasm between patients and the health care system, and it’s unnecessary.

Redundant tests, too

The researchers also found that 17% of the tests with alerts were actually duplicate/unnecessary, including tests where a diagnostic test for Hepatitis C was run again, even though Hepatitis C was confirmed and diagnosed via the same test previously.

Again, how can patients with access to their own information be a part of the solution to these problems? Many ways. Let them see their test results as close to the time of resulting as possible. Bring them in to the ordering process, before the result comes back. There’s this great quote from a recent New York Times blog post  (sent to me by fellow physician Jim Lewis, MD, at Kaiser Permanente) on this very issue:

Dr. Poston, an intensive care specialist, teaches medical students to begin educating patients about results even before the test is done. Patients should have realistic expectations about what results may or may not reveal, he tells students, and why some tests still take time to be analyzed. Not only will patient anxiety be somewhat alleviated, Dr. Poston said, but the role of the doctor as critical guide and partner in the patient’s care will be reinforced — even as a patient’s need to participate in decision-making will be supported.

Yes.

Envisioning a world where patients didn’t need to see any of their health data, conversations with Peter Levin (@Pllevin) and Lygeia Ricciardi (@lygeia).

I recently walked and talked with Peter, the CTO of the Department of Veterans Affairs, and Lygeia, at Office of National Coordinator.

Both are not clinicians, not trained in the health professions, and at the same time heavily involved in bringing patients and families their own health data.

Why is it that our patients ask for this data and not the data about the performance metrics of the aircraft they fly on? It’s simple – because health care isn’t perfect and they (and we) know it. When we get to a place where health systems can reliably deliver information that’s easy to understand, that doesn’t create safety risks, I’m confident the ePatientDave’s and Regina Holliday’s of the world would put down their tweeters and paintbrushes. They’d say, “I don’t need to be bothered with this information, I trust you, you always get it right.” Until that day comes, they’d like to help out, fill in the gaps, save themselves, the people they love, and their society from unnecessary harm. And lots and lots of physicians are going to stand with them.

Incidentally, in the first quarter of 2012, 8,462,414 lab test results have been viewed online by patients at Kaiser Permanente using My Health Manager, a double digit increase from 2011, but who’s counting 🙂

California Health and Safety Code Section 123148, which actively prevents patient access to their own data online, which should be modified, or partially repealed would be a significant step in supporting the goal of patients included in their health care.

California 2011-12 Assembly Bill 2253 – Could it end the prohibition of sharing certain test results online with patients?

California 2011-12 Assembly Bill 2253 – Version 99

Existing law authorizes the results of a clinical laboratory test performed at the request of a health care professional to be conveyed to the patient in electronic form if requested by the patient and if deemed most appropriate by the health care professional, except that existing law prohibits the conveyance by Internet posting or other electronic means of test results relating to HIV antibodies, the presence of hepatitis antigens, and the abuse of drugs, and specified test results that reveal a malignancy. This bill would authorize the conveyance by Internet posting or other electronic means of clinical laboratory test results related to HIV antibodies, the presence of hepatitis antigens, and the abuse of drugs, and specified test results that reveal a malignancy if requested by the patient, the means of conveyance is deemed most appropriate by the health care professional, and a health care professional has already discussed the results with the patient.

My understanding is that this is a partial repeal or modification of California Health and Safety Code Section123148, which currently forbids physicians from sharing certain types of test results with patients online. That law has been in place since 2002, and I’ve written about it more than a few times on this blog. See: “What on earth is the rationale there?” : Prohibition on sharing test results with patients online in California | Ted Eytan, MD for a little discussion of this. That post is from 2009, so change has been slow.

I recommend taking a look at this and seeing if the proposed changes are more patient friendly, or if they go far enough to allow patients to see their health data online. I’m not a California resident or a legislative expert, so comments are welcome (they would be even if I was :)).

What Group Health Physicians are saying about sharing imaging test results with patients – 1 year later

Time flies – it’s the 1 year anniversary of Group Health Cooperative (happy disclosure: The Group Health Physicians group is an affiliate of The Permanente Federation) sharing imaging (X-ray, MRI, CT) results with patients online through their secure patient portal, MyGroupHealth (http://www.ghc.org)

Group Health (@GroupHealth) is not the first health system to share imaging test results with patients. Unfortunately, it’s not the last either. The sharing of this type of test is what I would still call “controversial” in the minds of physicians. It’s not controversial in the minds of patients. In other words, many physicians are anxious about sharing the details of these results. Many patients are anxious, too, about not getting their results – they want them. You can learn why in my previous posts.

In any event, here are two quotes from Group Health physicians Barbara Detering, MD, and Martin (“Marty”) Levine, MD about their experience, brought to me by colleague Jeffrey Grice, MD ( @jeffreygrice ) who asked, “what’s your advice for physicians who are thinking about sharing these test results with patients?”

I strongly support releasing imaging results to patients online. I believe it results in less work, not more. The patients who obsess about every health care detail will continue to do so whether we release the data or not. For the vast majority of patients, they like having access to the information, and they end up being more informed.

It also incentivizes radiologists to develop standard ways to describe images knowing their records will be viewed by patients

Martin Levine | FAMILY PHYSICIAN & GERIATRICIAN
ASSISTANT MEDICAL DIRECTOR, PRIMARY CARE
Northgate Medical Center, Group Health Permanente

and

I completely agree with Marty… I have NOT found this change to be onerous. The number of extra calls, emails etc has been very limited and I think the opposite (that is not getting calls to just be sure its okay for negative studies) has been an invisible benefit.

It also is a secondary check. the patients will sometimes take more responsiblity for followup etc and it helps less fall through the cracks. I know this is our job, but in the end, nobody is going to be more invested in the results and followup of tests than the patient themselves and this allows them to be actively involved to an even greater level.

Barbara

Barbara J. Detering | MD
Family Physician, Family Health Center, Group Health
Board Member, Group Health Permanente

Barbara is on the Board of Group Health Physicians, and Marty is an Assistant Medical Director of Primary Care, and yet, I felt as I read these quotes that they could just as easily have been written by their own patients.

Knowing what patients want, and bringing them the information based on their needs/wants, brings to mind another great quote,

The best physician-leaders always behave as if they have a patient at their elbow, and they bring the patient’s perspective into every conversation. James Reinertsen, MD

We hope this helps others who are going through this decision making process.

Should Patients Get Direct Access to Their Laboratory Test Results? – — JAMA

Should Patients Get Direct Access to Their Laboratory Test Results? – — JAMA.

Sure, why not?

The authors of this article have done great work in this area, showing that “between 8% and 26% of abnormal test results, including those suspicious for malignancy, are not followed up in a timely manner.”

While they also feel that

To develop best practices in this area, the potential consequences and benefits of this approach should be subjected to rigorous evaluation.

It’s worth noting that 22.4 million test results were reviewed by patients online in 2011, just at Kaiser Permanente. This is an increase of 14 % from 2010.

I’m going to stick with the comment they cited in the piece “Giving Patients Their Results Online Might Be the Answer” as the better answer than the answer in the piece above :).

And, for a little walk down memory lane, it’s worth reading these two pieces, they will help frame the not-newness of this conversation.

See “Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded””, circa 1973.

@GroupHealth is now sharing imaging results with patients online – here’s their experience to date

While the automatic sharing of lab test results with patients online is becoming more commonplace, sharing imaging / radiology results / reports is still controversial.

There are several posts in this blog that talk about this, you can get the detail here.

And if you read carefully in various regulations, imaging results are often called out separately that lab test results for sharing with patients and families, which is more of a distinction created by the medical profession than by patients.

The literature shows (see link above) that patients don’t come to health care saying, “my imaging test results and lab test results are two different things, please only share lab test results with me.”

With this history in mind, it’s worth mentioning that Group Health Cooperative (@GroupHealth), who seem to be on an innovation streak these days, or actually most days* (see: The mHealth app from @GroupHealth promotes what people want : A relationship with their doctor) has been sharing imaging test results along with lab test results with its members since June 23, 2011. This is a big leap both because these results are available to be seen by members and families, and because they are automatically shared – previously, and in most systems, physicians need to click a button for this sharing to happen, which delays access.

*happy disclosure: Group Health Physicians are a Permanente Medical Group affiliated with The Permanente Federation

I asked John Kaschko, MD, from Group Health a few questions about how things are going, and he kindly wrote this summary for me:

As you read through this, note how they are changing the way they do things, to make them more accurate and enhancing of communication between patients and doctors, based on this experience.

Also just think about how this is transforming medical practice – a radiologist, sitting in front of an electronic viewbox, using their experience and judgement to narrate the features of an imaging study, is now doing this with the understanding that the report they generate will be read by the very people they are talking about in the dictaphone, the patient (and their family). That’s pretty big.

Thanks John and Group Health for the information and experience. Feel free to chat them up via their Twitter handle: @GroupHealth and/or add your comments and impressions (pun intended) below.

On your question: “Could I get  a few paragraphs from one of the docs about how imaging results sharing has gone  – is it 100% perfect? Have there been any issues? Do you share the entire report  or just parts, and in real time or a delay? “

Generally it’s gone  reasonably well, no significant issues with providers complaining about the  release, “I’m getting too many questions, etc  Our  providers were manually releasing through the “MyGH Done” button about 20%  of reports prior to going live with this automated release, so releasing these  was not a foreign concept to many.

We are only sharing a portion  of the report, the “Impression” field in Epic, not the “Result  Narrative” – Currently sharing plain films, mammos and DXAs – 2 day delay on plain films  and DXAs, 7 days on mammos.

It hasn’t been 100% perfect.

The two issues that have come up are:

1) on mammogram results, when a biopsy is  done, the report gets addended with the pathology report.  We  were initially releasing all mammo reports at 2 days…which meant (since  pathology comes back in 2 days) that when the  pathology information was added, the patient could see the path  results before staff had a chance to contact them. We addressed this quickly by  changing the release for mammos to 7 days rather than  2.

2) The other issue is about 20% of our  reports are showing up “blank” to patients. This is related to just sharing  the Impression part of the report and not the entire report, we have a  workflow/interface issue that is causing this.  In order to get part of the  radiology report into the Result Narrative and part into the Impression, this  requires that the Radiologist always say the word “Impression” in his/her  report. That gets recognized in the interface and everything subsequent gets put  into the “Impression” field (and everything before into Result Narrative).   If the radiologist says “Summary” or “Final Result”- these words are not recognized in  the interface and the Impession field ends up blank (the entire report is in the  Result Narrative field). Radiology is attempting to standardize the  process/language used to improve this but it still requires a manual step.

We  are debating whether to simply release the entire  report. Hope this helps.   JK

Oh one more thing, to people who say, “but patients won’t understand what’s in those reports,” here’s a tweet-versation from two Group Health physicians that shows what happens in a system where sharing with patients is the priority.

Now Reading: Medical record access does not modify anxiety; end of the Vineberg era in information sharing?

I think the title of this paper is clever, because based on where you come to this issue from, it will create one of two assumptions in your mind, either that full access to a person’s medical record “should” cause anxiety or that it “shouldn’t” cause anxiety. The answer from this study is that it does neither, so I guess either hypothesis in the reader’s mind will be disproved.

This study was started between 2003 and 2006 (! – a long time ago in Internet years, it’s not clear when it ended because it uses chemotherapy cycles as the end point), and involved randomizing patients to receive an actual briefcase that contained the following:

This briefcase included administrative data as well as the following reports: surgery, pathology, hospital- izations, nurse narratives, radiology and biologic reports, as well as overall medical and paramedical information concerning the patient’s treatment. The documents (sheets, imaging radiology, or compact discs) were given to the patient by the medical coordinator, who also provided explanations. Of course, the medical staff and nurses also provided the patient with information, although it was not standardized.

I find it interesting (and cool) that the commitment to provide this information included a commitment to make it understandable:

A medical lexicon and a user guide also were provided to the patient, who also was helped by the physi-cian and a paramedical coordinator in the handling and understanding of the various documents that were included in the dossier. The OMR was to be updated at each visit, and additional information could be mailed to the patient if appropriate.

And….the results were that 98% of the patients offered the chance to have full access chose it, and there was no difference in anxiety between the patients randomized to get their medical records by default versus the ones who needed a physician request to make it happen. Interestingly, it says 25% had “regrets” about accepting the full medical record.

We are in a fascinating time, I think, studying a practice that has little to no basis in science, which is denying patients access to their health information (or if you want to use some euphemisms, “Providing on request,” “Available for 73 cents a page”).

To this day I still don’t know:

  • How the medical profession decided that patients should not see their medical records
  • If any studies have ever been done showing a beneficial effect of hiding information/keeping secrets from patients

So if this is the case, why study something that was never proven to be useful, why not just stop doing it?

To think about this more, I took a little sojurn down medical memory lane, to learn the history of another famous procedure, in the history of Coronary Artery Bypass Graft (read this awesome article if you can)  called the Vineberg procedure. The Vineberg involved implanting the internal mammary artery into the left ventricle for ischemic hearts – with little evidence for its benefit initially, it was nevertheless done, often with devastating results:

Patients who were operated on with Vineberg’s approach frequently died suddenly or within a few minutes in the immediate postoperative period as a consequence of a myocardial infarction clearly detected on the ECG. I always tried to be present at the autopsies.

And then, it was replaced by bypass, at the same time:

It was hard for us to stop using Vineberg’s technique because of our previous clinical experience with it.

I think this is instructive – it’s going to be hard for us to stop using “the denying access technique” because of our previous clinical experience with it. And maybe, maybe, the linked EHR linked to a PHR is the coronary artery bypass equivalent of the procedure that ended the anecdotally generated Vineberg procedure in information sharing….what do you think?

With special thanks to Danielle Leach (@teaminspire), who forwarded this article to me, based on our conversation at the Center for Total Health, in front of the My Health Manager alcove. This place to talk about health sure is generating great conversations!

April 2011 Clinical Laboratory News: in addition to assay instruments, patient portals are an important laboratory tool ( thx, @AHRQIX )

April 2011 Clinical Laboratory News: Improving Patient Safety and Satisfaction via Patient Portals – April, 2011, “Why it’s important to provide Patients Access to their Electronic Medical Record”

I have to say this is one of the coolest pieces of media I have ever done with someone, because of the context. Nestled in between discussions of genomic sequencing, the way platelets work, and other news for the laboratory medicine professional is this conversation, about another awesome tool for the clinical laboratory – the patient portal.

The interview is a direct result of the AHRQ Innovations Exchange ( @AHRQIX ) Unconference, hosted in Bethesda, last year, where a few patients, a few doctors, and a few health professionals talked about improving patient safety. Thanks to Corrine Fantz, Ph.D., from Emory University, for thinking about her colleagues in clinical laboratories across the United States. This group of professionals is a very important stakeholder group in patient safety, service, and quality, one that I learned to respect very much during my personal health record / electronic health record journey.

See what you think, comments welcome.

Agreement with Disclosure of Imaging Results to patients – comment from a Professor of Radiology

This is the second post today about the value of patients having access to their health information online, in one of two “frontier” areas, imaging results.

Here’s the comment, that was sent to me via the comments page, and I have been given permission to repost here:

I am in complete agreement with direct disclosure of imaging results to patients–why not … create a single ‘patient portal’ that patients control and each health system must send pt records to it? It is a peculiar system we live with that charges a patient to take an image of their body, keep the image, and sends the report to their intermediary (their doctor) hoping they will get it. And the patient has no idea up front what that cost will be. (and of course, neither do the providers). Comedians may find great sport in this but it is unfortunately painful reality for many. – Kimberly Applegate, MD, MS, Vice Chair of Quality and Safety, Professor of Radiology and Pediatrics, Emory University School of Medicine

Dr. Applegate wrote this in response to this post, covering a study showing that even in EHR equipped organizations patients may not learn about abnormal imaging results when there is a dependency on their physician/health care team relaying the information.

I have written here about the issue of imaging results and why they are treated differently than other lab test results by some organizations (and states, notably California) when it comes to providing information online. Because the “norms” around sharing imaging results are changing more slowly than those around other test results, I think it’s significant when a medical leader in the field of Radiology makes a statement about this.

Thanks, Kimberly, for allowing me to share your thoughts here. As my previous post points out, the painful reality that Kimberly points out can be devastating for patients and families whose abnormal test result is not delivered by a system that doesn’t allow them to take part in keeping it accurate.