For my last week in Doha, I spent every day in the cancer hospital of Hamad Medical City, NCCCR (the National Center for Cancer Care & Research). I was meeting and interviewing patients there, finally cleared to do so after a lot of communication with the Hamad Medical Corporation. It was a goal of mine to meet with patients when I first designed my Watson project, but while I was in Sweden, I realized that it would be very difficult to access real patients due to legal and privacy concerns. Since I’m not affiliated with a well-established company or university, I have no established pipeline to access.
In Qatar, however, this problem was easier to navigate. It’s easier to find the right contacts in a smaller country with one central hospital system. I spoke with someone at the Medical Education Department of Hamad Medical Corporation, a department that has connections to all the Hamad hospitals and has helped clinical researchers in the past. I’m not a clinical researcher – I’m not testing any drug, but rather conducting very informal interviews – so they were a bit confused by my goal but approved it fairly quickly.
Unfortunately, I was only able to interview patients at the cancer center, NCCCR, as they are the only department that responded to my research request. Ideally, I would have interviewed a more diverse group of patients, specifically diabetes and asthma patients, to learn more about technology options for managing these chronic illnesses out of the hospital. Still, NCCCR was very welcoming and organized, and they helped me meet with a total of 15 patients.
The patients were a mix of men and women, 7 in the cancer daycare facility (with private beds) and 6 in the outpatient clinic center. Most had some type of cancer, but some of the outpatient interviewees were there for hematology issues instead, such as artery obstructions. Most of the patients spoke English, and for those that spoke only Arabic I used a family member or nurse as a translator. The age range I interviewed was 15 to 78 (average age: 44, median age: 44). Here are the questions I asked them with tallied results and a couple interesting responses (patient responses are in italics and have been paraphrased for length and clarity).
Where are you from? The Philippines (4); Jordan (2); Egypt (2); Qatar (4); Palestine (2)
Have you been to university? Yes (10); No (3, two Qataris and one Palestinian); Not yet (1)
What technology have you interacted with at the hospital – that is, what scans have you received here? MRI (13); PET Scan (10); CT Scan (7); Ultrasound (6); Echocardiogram (4); Biopsy (3); Mammogram (3); X-Ray (2); Radiotherapy (2); Bone Scan (2); Colonoscopy (1).
Note: These numbers likely underestimate reality. Most people had so many scans that they only listed as many as they remembered or found relevant, and some only referenced the more obvious ones after I asked to confirm (“Did you get an MRI, too?” “Oh, yes, of course.”).
For each scan, each interaction with technology, did you understand why it was necessary and what the benefit was? Was it explained well?
- Yes (13)
- It all helped, but it helped the medical team more than me because they needed to understand what was going on. They didn’t explain so much. For them it’s very routine – they just put you in there and do the test.
- I understood why each one was necessary but not the order in which the scans happened. We did a ton of tests that didn’t confirm cancer, and then finally a biopsy that did. I wish we had done the biopsy first.
- I’m happy with the doctor, but I also read all about the procedure beforehand.
- Sometimes the doctors explained too much! The full set of risks and benefits could be scary because of the risks.
- Mostly (1)
- Usually things were explained well, but not very frequently. The tests were explained with their risks and benefits.
Did it ever seem like too much, like some of the scans were unnecessary?
- No (10)
- Doctors explained everything.
- Not really (2)
- I feel like I got more x-rays than necessary: 10.
- I got a PET scan that didn’t show what it was supposed to, but that was a problem with the device and not with the doctor. [I feel like the doctor just ordered the wrong scan, but it was unclear].
- I feel like I got more x-rays than necessary: 10.
- Yes (1)
- I once refused an MRI because I had already gotten so many, and it was ordered by Hamad General Hospital instead of NCCCR.
Did you have any fears or worries about the technology? If so, were they addressed by your doctor? Did your doctor answer all your questions about the technology?
- Yes, but all my fears were alleviated (3)
- I was worried about exposure to radiation, but I did the scan after the nurse explained it.
- I wasn’t worried about the technology itself, but rather how it might affect my pregnancy. However, the doctors always explained how it might be affected.
- I thought the lung biopsy would be too risky because the doctor kept explaining the potential side effects and risks. It wasn’t until I asked the doctor if the risks would be easy to manage and he said yes that I realized it was worth it.
- No fears (11)
- I was uncomfortable with the biopsy and MRI, but not out of fear. [more because they are uncomfortable procedures to begin with.]
How do you feel about the technology here – is it good? What about the technicians – are they well trained?
- Yes, both are excellent (6)
- However, they need to increase number of machines. There is only one PET scanner in NCCCR and only one MRI machine.
- What they have is great, but not everything is available. We sent a blood sample abroad once for additional testing.
- Both are good but not perfect (6)
- There needs to be better awareness of technology. People here aren’t trained to use it entirely properly.
- One day the computer was working really slowly.
- One day they introduced a bunch of new computers and it was very confusing and caused lots of delays. Now, it’s fine.
- The technology is well-developed, but the technicians don’t make an effort to make you feel comfortable with it.
- Unasked (2)
What made you comfortable with the technology?
- Explanations from nurses and doctors (good communication) (6)
- Cooperative staff.
- The doctors are trustworthy, so their recommendation is important.
- Emotional support from nurses and doctors. (6)
- 9/10 accommodation. [I asked why not 10/10, and he said that most, but not all, of the nurses are super nice].
- The most important factors for feeling comfortable with the technology and the hospital experience in general are: having faith in God; being surrounded by the supportive presence of family; cleanliness; and having the support of staff (friendly people, rather than just machine people). I feel pampered by the staff, like I’m in a hotel, which has been important for my emotional health.
- Emotional support was good when it was there. Many of the nurses would smile, but with the doctors it would depend on your luck. Sometimes you have bad luck and you get a bad doctor.
- The doctors were always good to me.
- For the MRI, they asked me if I wanted to listen to music in headphones. I didn’t need it so I said no, but it was an attempt to make me more comfortable.
- Knowing what to expect in advance because I read about the process (1)
- Staff technique (2)
- The technicians consider patient preference.
- Upgraded tech (1)
- The initial MRI machine was too claustrophobic, but it was replaced with a more open version that’s better. However, I don’t really care about it as long as the tech shows some reduction of the disease – that’s the goal.
Is there anything you would change in the process?
- No (3)
- Yes (3)
- More non-tech options.
- There was a lack of communication between the radiotherapy department and NCCCR, so I kept getting calls for appointments that I wasn’t supposed to go to. My cancer returned, so I needed to stop my radiotherapy, but they didn’t get the memo – so they stressed me out with calls and texts.
- Wait time: I had to wait for a PET scan that finally diagnosed stage 4 cancer. It was frustrating because I had been to the hospital a couple times that year without the cancer getting detected. I might have been discharged too quickly in those visits, leading to the ultimate late-stage diagnosis.
- Unasked (9)
Follow-up to above: Are there other options (non-tech) that you would try?
- No (5)
- Yes (1)
- Sometimes, you should set aside the technology and take other suggestions. [This cancer patient has done a lot of reading about alternative cancer treatments because he really hates chemo. He said that he wants to try cannabis oil or a new treatment developed by a Russian doctor. He wasn’t saying that technology is bad, but that he’s tired of it and wants to try something else.]
Are you comfortable with technology in general? Do you use a smartphone?
- Yes (12)
- The hospital sends automatic SMS appointment reminders.
- The hospital call center calls me and my husband automatically to remind me of appointments.
- Mostly (1)
- Unasked (1)
That’s all. While I’m happy that I was finally able to meet with patients (I almost titled this post “Patience for Patients”), the type of medical technology we discussed in these interviews is not exactly the type that interests me. Heavy duty hospital technologies, like MRI machines, are often not used by patients out of choice. When you have cancer and you are in a hospital, all you want is to be cured; if your doctor orders a scan or biopsy or a surgery, you do it.
So while I was conducting these patient interviews, I was worried that they were not relevant to my project. To date, I’ve tried to focus my project on a different set of technology, that which exists outside the hospital, such as devices that encourage doctor-patient compliance, support medication adherence at home, and help long-term care of chronic illnesses day to day. These are technologies that people have to choose to use, as opposed to the various technologies one is subjected to as part of cancer diagnosis and treatment. Still, PET scanners, MRI machines, and so on are types of medical technologies, and it’s important to see them in this context. Now that it’s been a week, I do think that this was a good choice for my project. I learned that, in the context of more serious illnesses, an important factor for having a positive attitude towards medical technology is the recommendation of a trusted doctor. I think for people with a serious illness, user-centered design processes become less important in favor of robust functionality and expert opinion. Most of the patients I met didn’t mind any discomforts associated with the machines, as these discomforts pale in comparison to the pain and fear that result from cancer itself.
I do hope, though, that in the future cancer patients will not have to assume that difficult and painful treatment is a necessary evil of a difficult and painful disease. I can’t get the image out of my head of the 40-something patient who was desperate to tell me about cannabis oil because he is so scared of doing chemotherapy again. Like he said, sometimes we need to set aside the technology and think of something else.