Edited an hour later – added Business Impact section at end
Healthcare providers who are tracking patient experience and patient satisfaction, take note: a new study reported yesterday in Science Daily provides evidence that we patients really like it when we can view the data you collected about us.
Even us over-50 ones, who are widely believed to be technologically not up to the task. (Fans of patient autonomy, like SPM member Hugo Campos, will like this too.)
Read the whole piece in Science Daily for more specifics, but here are a couple of hot spots worth circulating widely:
“…2,562 patients, mean age 50.4, including a significant representation of older individuals. … ‘The high level of enrollment among people in this age group demonstrates their interest in tools that may facilitate the management of their complex medical records and communication with their providers,’ Dr. Greco said.”
“Nearly all (96 percent) of the patients responded positively to having direct access to their medical images, and 78 percent viewed their images independently.”
Note the “independently.” All by themselves, with nobody helping them – outside of an office visit!
This was about the use of the RSNA (radiology society)’s Image Share network. I haven’t used the product (I’d love to hear from people who have), but note these points from the article:
… RSNA Image Share, an Internet-based interoperable image exchange system that gives patients ownership of their imaging exams and control over access to their imaging records.
Ownership?? Did they say ownership, as in take it anywhere I want, all by myself??? Read on:
The network enables radiology sites to make imaging exams available for patients to incorporate in personal health record (PHR) accounts they can use to securely store, manage and share their imaging records.
Available for me to incorporate in my PHR? To manage and share my images, all by myself??
… the RSNA Image Share system avoids the legal delays and expenses associated with virtual private networks and enables the same flexibility of access characteristic of physical media like CDs. Patients who use this system have the ability to allow any provider they wish to access their images, as they do with CDs.
“Allow any provider they wish to access their images”: That’s a key enabler of patient autonomy – the patient’s ability to decide how they want their care to happen. Hugo Campos (mentioned above) wishes he had that kind of autonomy about the device his doctors wired into his heart.
[Edit: And Christine Bienvenue’s comment below brilliantly illustrates how this can have real clinical impact.]
I don’t know if there are any “gotchas” to RSNA Image Share – cost to the doctor, logistical hurdles, or anything – those would be great to discuss in comments. All I’m saying is, hooray for this evidence that patients (even 50+) overwhelmingly like control of their own images, and hooray for the idea of letting us do what we want with our own blinkin’ medical exams. Which are about us, after all, and which we paid for, one way or another.
Business impact for providers
This isn’t the first evidence that patients really value access to their information; this study has strong echos of the findings of the OpenNotes study. (See our post on the results and our many other posts.) From the results post:
- “Nearly 99% of patient respondents … wanted continued access to their visit notes.”
- “86% at BIDMC, 87% at GHS, and 89% at HMC agreed that open notes would be a … factor in choosing a future doctor or health plan.“(!)
So, people, connect the dots: in this era of changing healthcare, patient access is liked, and it looks like it will have real impact on which hospitals and providers are preferred by patients. As I often say in my speeches, “So, it’s game on: if Hospital X in a city says ‘We’re not gonna do that’ and Hospital Y across town says ‘We are,’ we’ll see how it plays out in the marketplace.”
It’s simple, as we’ve been saying for years: Give us our DaM data – Data About Me.
I have a recent story that illustrates this perfectly: I have been a TNBC patient for 4 and a half years now and gone through the whole 9 yards of treatments and surgeries, so I have a lot of specialists around me doing their own thing. This past summer there was a “scare” when my oncologist and radiologist couldn’t properly define what it is they were seeing on my MRI images and they were affraid of another relapse. So I got everyone’s opinion and got to reading about my symptoms on line. Because of other patient experiences I figured out what the problem was and put it all together: if my plastic surgeon had explained to my oncologist /radiologist what she had done for a procedure on me 2 years ago and how there was a possible reaction with radiotherapy, it would have avoided them not understanding and avoided me 2 biopsies and a week of anguish. There was a simple explaination, not a relapse. All because there is too much information spread out everywhere through all of my specialists that don’t communicate (and probably don’t have time to read through everything in my file). I am the glue that sticks them all togehter.
This sums it all up: “Fragmentation of health information among physicians, healthcare institutions or practices, and inefficient exchange of test results can decrease quality of care and contribute to high medical costs. Improving communications and giving patients more control over their care are critical goals of health IT initiatives.”
Christine, that’s such a great example that I’ve edited the post to point people here. Thank you! Let patients help!
Group Health opened up their radiology results to patients a few years ago (easier to do than the actual images) and the only workflow change was to alert/train the Radiologists to write for a wider audience.
You and Hugo are great about asking for data but since the beginning I have advocated not simply for “data” but treating patients as part of the care team.. It isn’t about a change in “access” to data but to shifting the patient from “recipient” of care and now data to being a full member of their own (or their family members care team)
If you really want to change a system you have to change the rules of the game or the roles of the players so give me “respect” and a new “role” as a full member of the care team member.
By default everyone on the care team from neuro-surgeon to MA has access to data and also has the ability to contribute to the creation of data, knowledge and most importantly decision making so once you realize that the patient is also part of the care team you no longer have arguments about data ownership or access – (can you imagine people on the care team getting data with different delays? docs getting data at once, the nurse in an hour, the MA in a day and the patient in 3 or 30 days – of course not)
So lets move beyond “give me my data” to “Patients are Part of the Care Team” or my personal meme “Patients are Providers”
My (large) clinic implemented an online “portal” to manage the clinic/patient interface, and has been aggressively encouraging patients to sign up. I signed up long ago, but stopped by their booth in the clinic recently to ask how I could arrange to have all test results automatically posted to my portal account. “Oh, you can’t do that!” was the reply. They just don’t get it.