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.

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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?

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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.

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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 :)).

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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.

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Now Reading: Yikes! What physicians in training don’t ask patients admitted to the hospital

The hospital can be a very scary place, and when I read this study, I immediately thought that it would bring to life the worst fears of our patients, their families, and their doctors too.

The paper describes structured observations of PGY-1 and PGY-2 (first and second year out of medical school physicians-in-training) doing initial history and physical examinations of patients in the hospital.

As the title says, the study was “single-blinded” – the physicians observed did not know what they were being observed for, just that they were being observed (consent was obtained from both the patients and the physicians).

And… while patients were asked 100% of the time what medications they were taking (score for medication reconciliation), they were asked what they did for a living 4% of the time, level of education 0 % of the time, and from 0 to 100% of a list of other important pieces of information. Same general trends were seen in physical exam performance. Take a look at the charts by clicking on the link above and see what thing you would want your doctor to know if you were put in the hospital wasn’t asked.

Average time observed doing physicals and history: 7.3 minutes for history, 5.29 minutes for physicals, average time claimed in a survey of the doctors: 28 minutes and 15 minutes respectively . Huge discrepancy.

36% of the time, the physicians did not introduce themselves to the patient.

72% of the time, the physicians did not explain what they were there to do.

Remember, this is admission to the hospital.

“Unclear what the most effective approach would be to change these behaviors”

This is the ominous sounding statement made in the discussion by the author, who appropriately conveys his dissatisfaction with these results, and the fact that the physicians have been taught what the right things are to do.

From my own experience, I believe him. The issue isn’t knowing what to do. In my own training, I didn’t explore the patient and family experience as much as I should have. My residency faculty really helped me with that. At the same time, they were under tremendous pressure to balance educational requirements, the needs of patients getting care, and the needs of their fellow physicians and nurses that they recruited to participate in our teaching. Sometimes this balance was not balanced in a stressful environment.

Could we recruit patients and families also?

As much as we recruit quality faculty to teach residents, couldn’t we recruit patients and families, too?

It’s a familiar experience after a resident takes care of a patient in the hospital to be asked by the patient if they can join the resident’s practice. What would it be like if each resident needed to recruit 1-3 patients that they took care of to become part of THEIR (the resident’s) care team? Imagine them asking one of their patients or their family on discharge, “Mrs. Smith, as part of my training, I need to have 3 patient advisors who will help supervise my training, would you be available?”

Interestingly, an example of the clarity that patients bring to a physician’s development at any stage of practice-life comes in the same issue of The Permanente Journal, from a patient with an adverse outcome (“Bridging Physician-Patient Perspectives Following an Adverse Medical Outcome

Until my mother went through this experience, it never occurred to me how much medical professionals ask of us. Our family was asked to entrust the care of our loved one to strangers, her life and health to a system that sometimes creates barriers for the sake of efficiency. Then in the face of an error we are expected to stay quiet and accept this devastating impact on our loved one.

This article speaks about the HealthCare Ombudsman/Mediator Program at Kaiser Permanente, which brings patients and physicians together to resolve communication, quality, and trust issues. In the same article, a physician who discloses a surgical error carefully to a patient and their family says:

This process of explaining myself, opening me up to colleague scrutiny and patient disappointment, was by no means easy. Nevertheless, I know the price paid was infinitely less than living with the thought I had caused harm to a patient and did nothing to remedy it with a truthful disclosure and a heartfelt apology.

and

Thereafter, I followed-up with my patient and her family, explaining the systemic changes made to prevent a wrong part from ever being introduced during a surgical procedure.

Could some of these people, during and after their healing, serve as advisors/coaches/guardian angels of our future physicians as they learn their craft? They (the patients) are who I see as my guardian angels today – this just speeds up that journey.

Is this farfetched, is this happening somewhere already? What are the nuances? Please post in the comments

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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.

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