Insights needed into People Centered Care and Technology-What's your take?

[Gail Bellissimo]

Hi everyone, I am trying to gain insight from my fellow PAN members about the good, bad, and ugly of advancing technology in acute care and how it helps or hinders with patient engagement and People Centered Care.

I would be extremely grateful to receive any feedback about your experiences you've encountered as a patient/caregiver, and/or any engagement activities in this area.

Just a couple of examples, but I know there are many more....

How has advancing technology in hospitals contributed +/- to care, within a hospital or community setting or other?

How has it improved communication (or not)?

Do you have examples, where technology implemented has made a difference positively or negatively?

I REALLY appreciate any and all input!

Be well, Gail

[Gail Bellissimo]

Thanks Annette, I wonder whether the surgeon was even aware of the patient portal!

[Annette McKinnon]

I now have access to my records through a patient portal, so after a recent operation, I went to the portal and read the surgeon's discharge not. It was 6 short lines long and had 3 uncommon acronyms.

To be honest I am somewhat intimidated by surgeons in general, and I am not a shrinking violet. But this time I raised the subject - "Why is my discharge note so brief and full of acronyms?" His answer was "I didn't write it for you." and he went on to say the note was for the GP. Since the surgery I had was on my foot and I was NWB (non-weight bearing for the non-surgeons among us), I suggested that few of his patients would actually be seeing our GPs - just getting to post-op check ups was a trial.

So that's how technology gave me information and subsequently the power to challenge a surgeon.

[Nancy Roper]

Hi Gail

Thanks for asking.

For starters ... have you seen the "Greg's Wings" movie, done by Health Quality Alberta? It tells the story of a 31-year-old who got a curable cancer but the medical system (professionals and admin people) fumbled his case for 400+ days until he died. HQA made a number of recommendations as a result of the case, one of which is that patient portals are critical and may have saved his life, since he would have been able to see all the botched referrals and failed followup and he might have taken action that might have saved himself.

And on a more personal note ... my hospital got a patient portal and it is an EXCELLENT one. We get ALL our clinical notes, not just our bloodwork and we get it real time. When I was at the ER and the fracture clinic with my broken shoulder, I read the radiologist's report on my iPhone before the doctor came to see me each time, which let me formulate my questions in preparation ... and that was important because the care that I got was less than ideal so I really had to advocate for myself. When I moved to the physiotherapy phase, I eventually discovered some EXCELLENT allied health providers (accupuncture, osteopath, myosfascial release physiotherapy, chiropractor) who made the world of difference in my recovery ... and thanks to the portal, I was able to cut/paste all my case info into a Word file and give it to them. They said it was a real help in letting them treat me since they knew the specifics of my injury so were able to do some treatments that they wouldn't have done if they hadn't had the official reports (eg exact location and character of the break). Hopefully one day everyone will be connected and I can just give them access to the portal rather than spending 2 hours cutting and pasting it!

On the flip side .... I have a specialist that I adore. She has provided perfection in care for me for 15+ years now. She is a key player at the med school .... so you would think she would be on board with the patient portal ... but that was not the case. At my first appt after I got access to the portal, I read her clinical note and there was a mistake in it, so I politely asked her to fix it. She went BALLISTIC and said some incredibly hurtful things, to the point that our relationship will never be the same. Anyway, the net of it is that the doctors are apparently struggling with the change in usage of their clinical notes. I'm sure they have to learn to phrase things differently now that patients will be reading the notes, both for diplomacy (no more saying that the patient is lazy or whatever) and understandability (need to write things out in full rather than using doctor-speak, etc). And the healthcare profession is going to need to come up with a way for patients to contribute to their health records - eg to add additional info, or suggest corrections, or fill out referral forms for doctors who aren't willing to write good referral letters (apparently there are a lot of those) etc.

Let me stop there for now, but I may post again as I think of other examples. Good luck on your project! ....N

[Nancy Roper]

Hmmm ... that didn't take long before I had more info to share!

Our patient portal makes all my historic records available, so when I wonder when I had my last screening test or whatever, I can go look it up which is great. It also has all my future appointments listed, and I've set up reminders for my appointments (I picked a 1-week reminder and a 1-day reminder) which are a big help and I'm sure they're saving the hospital a lot of money since they don't have staff doing the reminder calls.

Bad-news results (eg oncology pathology reports) are a concern, but our hospital did some surveys to find out if people wanted to receive those or suppress them till after their follow-up appointment. I believe they implemented a setting in the portal where people can say whether they want to receive certain types of reports prior to the appointment or not. A group of pathologists have created an EXCELLENT website that is a primer on pathology reports ... they did it in response to patients getting these reports prior to their followup appointment .. another great use of technology.

I also notice that my family doctor is way more efficient now that her office has been automated. She sits in the appointment with her laptop and can easily find historic information. The laptop also alerts her to vaccinations and tests that are due and makes it easy for her to print out my lab requests and prescriptions. I'm hoping it also has some sort of alert re drug allergies and interactions and some sort of symptom checker too, although I don't know if that's the case. I feel like my health is in better hands with this assistive technology because I think the amount of stuff that doctors were supposed to remember and check was way too much to be humanly possible without an automated system.

My osteopath has a really nice scheduling/billing system where I book my appointments online and then get automatic reminders. She then sends me my invoice online. She's also great to respond to emails and she emails me diagrams of any exercises that we have added to the routine. It's refreshing to see this use of technology when the mainstream medical profession is 30 years behind in their technology ... it makes my life so much simpler as a patient.

.....N

[Nancy Roper]

ha .. me again ... and here's a really big one:

I'm retired from IBM Watson Health. Watson is the computer that played on Jeopardy in 2011. It's special because it can read and understand English sentences, whereas previous computers just crunched numbers. This is important in the medical community where so much of the data is locked up in doctor's notes and reports.

Anyway, my Watson job was in Clinical Trial Matching. The oncology community is pretty much unanimous that a patient's best chance for long term survival is to get onto a clinical trial ... but clinical trials have approx 50-60 criteria each to decide which patients are eligible, based on what the study drug is intended for and the things that are expected to be risky about it. Matching patients to the trials is painstaking and has been done manually up until now. It's so time-consuming, that only the very special institutions do screening and only for a subset of their patients.

Enter Watson Clinical Trial Matching where the computer can read the trial document to understand the criteria and then read the patient record to see if the patient is a fit. This is a game-changer and will eventually allow every patient to be screened at every appointment and considered for trials that are running anywhere in the world, if desired.

This will improve outcomes for each patient (think of all the ladies with HER2 breast cancer who lucked out and got on the Herceptin trial that changed their disease from a terminal illness to a treatable condition). It will also let the pharmaceutical companies get patients signed up on their trials more quickly which will help them to find the successful drugs and get them to market (did you know that many drugs never get to market because they can't find enough patients to fill their trials?). And that will reduce costs for the pharmaceuticals which will hopefully make the drugs cheaper and thus accessible to more patients.

Anyway ... this is the kind of thing that we need to be making available at every hospital (oncology for now, but there are clinical trials in many other disease areas that will hopefully be covered eventually too).

Note that there are other Watson products that are of interest too ... eg Watson for Oncology helps doctors to find the proper treatment for each patient based on their history ... this is important in smaller centres where oncologists can't possibly stay up to date on the current standard-of-care for every kind of cancer that he might see in a week.

If you're interested, here's a video demo of Watson for Clinical Trial Matching:

https://www.youtube.com/watch?v=grDWR7hMQQQ

And here's an article about it's use in production at the Mayo Clinic in Rochester, MN:

https://newsnetwork.mayoclinic.org/discussion/mayo-clinics-clinical-trial-matching-project-sees-higher-enrollment-in-breast-cancer-trials-through-use-of-artificial-intelligence/

And here's a video of my last project before I retired at Highlands Oncology Group in Arkansas:

https://highlandsoncologygroup.com/research/ibm-watson/

There is so much that we can do with technology to make better healthcare available to patients and to do it more economically! ....N

[Gail Bellissimo]

Wow Nancy, this is great info. Thank you for sharing!!

[Denyse Lynch]

Thank you for sharing Nancy ... continuous learning! The future of this technology will be immensely beneficial to patients, medical professionals and the health system!! BRAVO.

Best, Denyse

[Denyse Lynch]

Annette.... I admire the persistence of so many members of PAN to improve our care -

THANK YOU.

Denyse