Informal Survey:Patient Portals

Tina2 · October 2017

Does your MO provide a patient portal?

If so, do you use it? Are you satisfied? What do you like about it? What needs improvement?

Tina

sheila888 · October 2017

Hi Tina..most of my doctors provide it....

I mostly use my patient portal with Quest Lab

Sometimes with MO to see my partial blood work that they do in the office.

Sheila ❤

DivineMrsM · October 2017

Tina, do you mean access to medical visits and reports?

I am able to access those thru both my primary doctor and oncologist. They are not affiliated with each other. My primary is local, and the small hospital system (named Trinity) he is associated with began a patient portal several years ago. My onc is in a large Pittsburgh hospital and surprisingly, it was only last year they began putting records into a portal to be accessed by patients. I would have thought Pittsburgh would have had it first.

And the thing is, many or all records from both places can be seen by both doctors. I realized this when I went to a Trinity express care for bronchitis in March, was prescribed three different meds, and a few months later at my onc visit, the nurse was reviewing current meds and asked about the three I'd been prescribed by Trinity express in March.

I'm glad to get test results and lab work results so easily. The onc's office records the day I visit, weight and blood pressure and a summary of the visit. Any upcoming appointments or tests are marked, so its a convenient reference rather than try to fnd a piece of paper in my desk or a calendar in my purse where I may or may not have marked it down. The primary doesn't record the visit date, weight, blood pressure or upcoming appointments and I wish they did.

Is there any particular reason you ask about the portal?

RosesToeses · October 2017

My onc, primary, and the specialists I see are all in the same large system and use the same portal and electronic record.

I absolutely love it!

I use it to request rx refills, check my appointments, ask my onc non-urgent questions, read my radiology and lab reports, my onc uses it to send my tumor markers early, etc. When I take a trip, I use it to print out my med list so I have a paper copy in hand if I need it. I used it when I filled out my disability paperwork for the meds and exact wording for the dx. I also use it to double check dates and numbers (When did my pulse start going up? was my bilirubin that high when I was on Ibrance? etc.)

Really, there's nothing I dislike about it, it's pretty intuitive to use and makes my life easier.

If there's anything more specific you're thinking of, please ask away!

pajim · October 2017

Yep. Partners Patient Gateway. I'm in the system so it covers all my docs. Has past and future appointments.

I get my blood work results immediately (even before I see the onc). It has all blood results, all scan results, etc., etc. The tumor markers and scan reports are embargoed for a week as they feel you should talk with your doc before reading. But it's all there so I don't have to keep a file.

I don't use it for asking for appointments or asking something of my onc's office. He's not so good with the technology. I e-mail his clinical assistant.

The thing most in need of improvement is for my onc to use it LOL. But everything in the patient record is there except his notes.

sueopp · October 2017

Yup, almost all of my care providers (primary, oncology, outpatient radiology etc) are in the same location and all available on my patient portal. Do I like it? No, but 1) I am beyond primitive when it comes to technology (technologically impaired) and 2) my heart prefers one on one communication in person. I know that those days are pretty much gone forever, so I use the portal. Sigh.

mirryp · October 2017

My cancer center has one and so does the hospital where I get all labs and tests. The cancer center isn't all that helpful unless I forget when my next appointment is.I they don't update it until after my appointment. The hospital posts after results usually before my appointment so I can be prepared before and don't have to wait nervously. The cancer center ones does have forums and education stuff available that I have used.

magiclight · October 2017

my patient portals need to have more than lab and some other test results. I would like to see the doctors notes - transparency please. I know I can request a copy of my chart, but why not make all that data available on the portal.

bigbhome · October 2017

I love my patient portal! I get everything from mine! Doctors notes, lab results, scan results, med list, etc...no scan results till I see Mo. But I get scans one day, and see Mo the next. Can't complain.

Claudia

Sadiesservant · October 2017

I am so envious of those of you in the US who have access to a portal. I would love to have the ability to look at scan results without having to see my oncologist. As it is, I have to go in to the Cancer Agency to request copies of my records every time I want it updated. Then I get my MO’s notes, copies of blood work results and the notes from the radiologist on any scans. I don’t have the ability to actually see the scans (which I would love to be able to access) and this does not include any reports from my GP or private radiology labs. Fortunately, i can now get immediate access to my blood results if I go through the private company that runs these tests. The down side of this however is that there is usually a delay in getting the results to my MO

Tina2 · October 2017

Why I asked this question:

My MO's office was slow to establish a patient portal. I didn't know it existed until the office changed lab providers and I could no longer access my blood test results from the lab itself. When I enrolled in the portal two months ago, I discovered omissions (scan reports not updated for a year, lab reports not updated for months) and serious errors (incorrect diagnoses) in my chart. The structure of the portal was clumsy to navigate with condescending content (eg: choose the emoji that represents your current mood). It did not reflect the high standards and excellent reputation of the practice. These issues were of enough concern for me to point them out to my doctor, bringing my hand-corrected printouts to my appointment.

To his credit, my doctor called in the office administrator and a senior nurse on the spot. I logged in and walked them through the site page by page, showing them the issues. It became a serious meeting about the importance of accurate, timely and appropriate electronic communication.

The office is now researching other portal providers. I volunteered to beta test.

Tina

cive · October 2017

My PCP doesn't have a patient portal, but my MO does. I love it, I can look at my results when they come in instead of having to wait for my next appointment. Forewarned is forearmed so I know what I want to discuss when I next have an appointment.

DivineMrsM · October 2017

Tina, wow, go you! That is fantastic that you were able to demonstrate what the issues on your patient portal were to your doctor and office administrator. Too many people will never speak up even if they are frustrated with a site like that. It is great your doctor was so receptive. All patients are going to benefit from your actions to improve the portal. That really impresses me!

Tina2 · October 2017

That's lovely of you to say, Divine. Thank you.

I was pretty upset, particularly about the erroneous diagnoses. When I brought him my complaints and proof, my doctor told me he hadn't thought the portal was ready for prime time, but that the staff had wanted to go ahead. My reaction was music to his ears, probably.

Getting a picture--however small-- of the overall lay of the land from participants in this thread showed me that other U.S. MOs offered successful portals, which gave me confidence in my right to be concerned and to request a solution.

Tina

pajim · October 2017

Tina, you go girl! Mine sort of shows my diagnoses (one of which is 'overweight' lol) but only if I read the visit reports. My guess is that when they put yours in, they screwed up the data import.

Glad you're getting them to think/fix.

Brendatrue · October 2017

Tina, my MO's practice, part of a large healthcare system, still does not have a patient portal available. The practice has been "working on it" for well over a year; the system itself has had a working patient portal for several years now. Patient portals are made available by all of my other doctors, from multiple large health care systems. One of the patient portal issues I find most aggravating is the one that magiclight mentioned: lack of access to the visit note itself. My "visit summary" available via patient portal from internist, cardiologist, and other doctors does not share the essence of the visit, just the basics that I already know. In reading my visit notes, which I always have to request personally and receive only on paper, I occasionally discover aspects of my care that were not discussed with me or errors that need to be corrected. A patient portal feature that I particularly like is the mechanism for correcting errors in the record. I have caught quite a few errors and proposed correction; I am advised when the correction has been made and can check that. I also appreciate being able to communicate directly with my doctors when that option is available, which is not always the case. One of my doctors routinely sends a message to me within 24 hours of a visit to request whether I understood all that was discussed, whether I have thought of additional questions or problems that need to be addressed, and whether I need a follow-up call or message through the system. That feature also has been helpful. Of course, I like being able to access test results, request refills and earlier appointments, etc., too.

One issue that has arisen and that surprised me: When I was unable to get a NP to return my call about an adverse reaction to a medication (not a controlled substance), I sent a message via patient portal requesting follow up. In her reply, she minimally addressed that medication issue, declined to prescribe the medication that my doctor had advised would be a next-line med, and focused on my use of lorazepam (prescribed by another practice) and morphine sulfate immediate release (prescribed by her supervising physician). She implied that I was drug-seeking and informed me that these meds would no longer be prescribed to me in the future. I was livid, not only because she over-reacted to my very conservative use of the two controlled substances, but also because she conveyed her thoughts via the patient portal, which all the other providers in that particular health care system can access, in essence violating my rights to privacy and confidentiality with regard to my use of controlled substances. Her actions also potentially jeopardize my ability to obtain appropriate care (including pain management) in the system's ED or from other of the system's doctors, if that need arises. I filed a complaint, the practice manager and my doctor were informed, my doctor apologized, I no longer will see that particular NP, she has been reprimanded--but her note remains a part of my electronic health record. To my credit, I did post a lengthy reply to her misguided response, and that also is part of my electronic health record. All that to say: ALL care providers in a practice using the patient portal should be instructed on appropriate use of messaging and how best to protect clients' privacy and confidentiality.

You are definitely on track with your concerns, and I hope your doctor's practice takes your input seriously!

stagefree · October 2017

hi Tina,

Mine is old school.. everything still manual.

Hugs

Ebru

Maire67 · October 2017

My center has a patient portal. It's great to access info instead of waiting. Unfortunately or fortunately The portal allowed me to access PET results that showed my bone mets. My mo was away so I sat with the info for 2 weeks. One benefit was that after 2 weeks I had formulated my questions and calmed down ..a bit.

Prior to that I had to request and pay for print outs from a company outside the hospital. Requests had to be given in person or notarized. Really they are my test results. As patients the more information we have the better we can advocate for ourselves.

BTW. According to the portal I only had a lumpectomy . No record of the mastectomy appears. Maybe it didn't happen???

Informal Survey:Patient Portals

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