Earlier this week I had the privilege to speak to a leaders forum at the health authority I work for. Held semi-annually, these forums are the leaders, managers, directors, VPs and chiefs of the various clinical and administrative departments that deliver care – about 400 people. The theme for this forum was improving the patient experience.
I was in a unique position – I am their peer, a fellow employee with intimate knowledge of the clinical systems used to deliver care, designing the clinical user experience with a focus on usability. Plus I am now a patient. I was able to share the challenges I was experiencing as a patient as well as ways we could improve. I wasn’t just stating the problem, I was also suggesting concrete options to make positive, immediate, impactful change.
I took full advantage of the opportunity to speak to a captive audience that could approve, fund and sustain these changes! With the CEO, COO, CFO and several VPs and Exec Directors in the room who control these decisions, it was a once-in-a-lifetime chance to start to build consensus and momentum for change.
The text of my speech is shared below. It concentrates on two things, intentionally keeping the message short and simple to absorb and understand. This is the place to start – there are more ideas and feedback, but let’s start here.
My focus was on including the patient in dialogue right from the day of diagnosis. Help them (me) understand my disease/condition in simple, non-medicalese terms. Put my cancer in context of what’s in front of me. Note that I’m not saying my prognosis and how long I’ll live (although for some that might be important and this would be a place to ask questions).
What I need as a patient is to understand how what I ‘have’ fits into a care path. What are my options? If I choose this, what happens? Do I close doors if I do this (are some options removed down the line based on what I choose earlier)? Where can I get help/support? What kind of support might I need? Are there things I should do now to get ready for what’s ahead (nutrition, fitness, etc)?
Patients face an overwhelming amount of information that is shared with them after their diagnosis. This is especially true for cancer and chronic disease patients. The information they get is all good and all helpful, but it’s not coordinated and centralized. It’s not put through a patient-friendly filter first.
As healthcare deliverers, we are the ones who should do the heavy lifting, coordinating all of the information into helpful, non-repetitive/non-contradictive packages. For diseases that require lots of scheduling, we should not let the fact that it requires extra effort to provide a consistent experience with the same clinical caregivers to the same patient throughout their treatment stop us from doing it. As a patient, I don’t give a rat’s ass that it’s hard to do. Just do it. (As the person who works on those systems, I know that some are old, antiquated monsters that are hard to use – but that’s our problem, not our patients’.)
Here’s my speech. The slides that I used to support it are at the end – in both Mac & Windows versions.
Leaders Forum Speech – Improving the Cancer Patient Experience
My remarks today are not about the quality of care I am receiving. My team is excellent – literally world class.
My radiologist, pathologist, surgeon, medical oncologist and radiation oncologist are leaders in their fields and giving me excellent care. I am both lucky and grateful.
My patient experience, however, has room for improvement.
When I first got my diagnosis back in June, I said to my fellow Enterprise Architecture and CST workflow colleagues that the User Experience person in me was thrilled to get an inside look at the patient reality. I wished it was someone else’s reality, but you take what you can get.
I’ve been taking notes and some of my observations I’ve shared on my blog about the cancer patient experience – the address will appear on the slide at the end.
We can make immediate, positive, impactful change on the patient experience in both small and big ways – we just need to start. And it starts with dialogue like we’re having today. I’m thrilled to be included.
Chemotherapy, for instance, is incredibly complex and as a PMP I literally had to do a work breakdown structure and timeline to manage it. Take these drugs on this day. Stop that drug on day three, but start taking this drug on day two. If this happens, take this drug. If that happens, call this number.
The information tsunami, appointments and drug regime is overwhelming – we should have a trip planner guide ready for all travelers. And I mean more than just a list of side effects.
There is no app for this, not even a paper guide – but my medical oncologist has been trying to get funding to build one for almost two years.
A small window into the world of a chemo patient is the list of side effects. Everyone in this room knows that chemotherapy comes with side effects. As a chemo patient, I got a list of side effects for the chemo drugs they inject, plus the drugs I have to take for the side effects of those drugs. That’s about 12 or so pages of things that can happen to you, ranging from nausea, constipation, hair loss and heartburn to serious, get-to-the-hospital-right-away infection.
Some of these drugs have the same side effects, or counter-balancing side effects. This drug gives you diarrhea but this one makes you constipated. This drug makes you wired, but this one makes you tired and fatigued.
Many patients get so overwhelmed by these lists as you wade through scary thing after scary thing that they just stop reading.
What I really need as a patient is a list organized by side effects – a simple spreadsheet would do the trick – side effects down the left, with two columns listing what drugs cause what, grouped together so I can see the common causes, and a column telling me how to manage it. (see slide)
The major courses of chemo are already pre-determined – they’re listed in the chemotherapy protocols on the BCCA website. It would be easy to do a patient-friendly grouping something like this for each chemo protocol as part of the patient hand-outs.
And, can we talk about the number of forms you have to fill out that ask for the same information over and over again! In one instance I literally filled in the same form at the MRI centre five days apart. Among the many many tests I had were two MRIs – at the same location, 5 days apart. When I said I’d been there less than a week before, the receptionist told me that the form I’d filled out last week was ‘with my chart upstairs’. I filled it in again, muttering under my breath about how much we need to fix this the whole time. By that time I’d filled in about 18 forms and signed my life away so many times I’d lost count. Filling in the exact duplicate form in five days was really irritating.
I’d like to share a thing I think is really critical to a better patient experience.
This slide gives you a quick overview of my patient journey so far:
- biopsy performed on June 2
- diagnosis delivered by my GP on June 6 – Invasive Lobular Carcinoma
- that’s all he knew – you have cancer, and I’ve booked you for surgery
- surgery July 2
- I got to meet my medical oncologist for the first time on August 11
- time elapsed between my diagnosis and my first chance to talk to someone who knew what my cancer was and the treatment path in front of me was 69 days
- chemotherapy started August 27
It’s important to understand that decisions made on June 6 affect your options going forward. Doors open and close based on the choices you make.
But I haven’t talked to anyone yet about what my cancer is and how it behaves, and what my future treatment includes – chemo yes or no, radiation yes or no, endocrine therapy yes or no – these are all unknowns to me on June 6.
When someone tells you you have cancer, your first thought is to get it out of you – so the surgery made sense to me. I chose the recommended option of lumpectomy and sentinel node biopsy.
That put wheels in motion that affected the choices open to me on August 11th – but I didn’t know that on June 6.
Everything my clinical care path needed to know about my treatment options and sequence was determined on June 2, when that BCCA pathologist looked through that microscope and saw invasive carcinoma in that slide.
Why, as a patient, am I not sitting in a 360 degree meeting with all of the specialties who will be a part of my future care on June 6? My clinical future is already determined – why am I not included in the discussion?
Finally, I’d like to take 30 seconds to help you understand something that’s critical to me as a chemotherapy patient.
Turn to the person beside you that you know the least. Ideally you just met them this morning and all you know is their title.
Now, hold out your arm in front of you towards them. Look them straight in the eye and imagine that this is the person who is going to insert an IV into your wrist that will, for the next 2 hours, pump your body full of cytotoxic poison that could damage your veins and will make you feel like crap for the next 5 days.
… ok, it’s two hours later and things have gone well. Your veins are fine. Your fingers are fine. You’ve not had any reactions, and your nurse has been great.
Can you imagine the level of trust that has just been built with that chemotherapy nurse, how important it would be to you as a chemotherapy patient who has to go through this three more times to know that your chemo nurse would be the same one you’ve just come to trust?
As of today, I don’t know who my chemotherapy nurse is going to be two days from now, and I have to go through that initial anxiety all over again, every time.
That patient experience sucks.
We can change these things. We can build that app. Let’s start today.