Let Emotion Be Your Guide
November 1, 2016 5:38 PM Subscribe
We, as human beings, wanted to hear other human beings tell us about the difficulties of caring for a mother with Alzheimer’s disease. We wanted to know what it felt like to receive a cancer diagnosis after a long journey to many doctors across a spectrum of specialties. We wanted to understand what we could do, in any small way, to help make these Worst Days minutely less horrible, less terrifying, and less out-of-control. We knew that the client was behind the two-way mirror, concerned about the website navigation, but we also knew that we were going to get to someplace much more important and meaningful by following wherever these stories took us.
I found this to be an interesting read, both as an information science professional and a cancer patient. And dear god, yes, hospitals could do SO MUCH to improve their user experience and none of it has to do with their website. (Although a good patient care portal that shows you your own test results and doctors notes IS useful.)
posted by MsMolly at 8:46 PM on November 1, 2016 [1 favorite]
posted by MsMolly at 8:46 PM on November 1, 2016 [1 favorite]
This seems like a promising essay, except for the bit in the middle where they admit that none of their strategic recommendations have been implemented because of hospital reorganization. Which makes me suspect they never will.
posted by suelac at 8:49 PM on November 1, 2016 [4 favorites]
posted by suelac at 8:49 PM on November 1, 2016 [4 favorites]
I followed the link expecting to read stories about people dealing with their worst days in this vale of tears and strategies for making "these Worst Days minutely less horrible, less terrifying, and less out-of-control". I have to say, I was surprised to find that the clients behind the two-way mirror were employed by a hospital and the they were learning this from people hired to improve customer* experience regarding the hospital website.
Shouldn't hospitals have this subject covered in spades by now? And if they want to improve in this regard, surely they can find researchers who already know a thing or two about structuring interviews with this population. And "Hmm, I'd never think to go to the hospital website..." can't be a surprise, right? I'm thinking that people don't tend to go to a particular website and look for info about a specific subject (metafilter excepted, of course). Rather, they search for the subject and go to the most promising websites.
I appreciate the post—it was an eye-opener. The most important thing I'm taking away from the article is renewed gratitude that my people and I have had so few hospital-related experiences in this lifetime.
*My reaction was probably colored by the use of "customer" when referring to what used to be called "patients" or "clients". To my ear, "customer" implies that people have a choice regarding where to buy health care services, when in fact that decision is made by their insurance provider. Actually, anything that paints health care as a market commodity is going to put me off.
posted by she's not there at 12:39 AM on November 2, 2016 [3 favorites]
Shouldn't hospitals have this subject covered in spades by now? And if they want to improve in this regard, surely they can find researchers who already know a thing or two about structuring interviews with this population. And "Hmm, I'd never think to go to the hospital website..." can't be a surprise, right? I'm thinking that people don't tend to go to a particular website and look for info about a specific subject (metafilter excepted, of course). Rather, they search for the subject and go to the most promising websites.
I appreciate the post—it was an eye-opener. The most important thing I'm taking away from the article is renewed gratitude that my people and I have had so few hospital-related experiences in this lifetime.
*My reaction was probably colored by the use of "customer" when referring to what used to be called "patients" or "clients". To my ear, "customer" implies that people have a choice regarding where to buy health care services, when in fact that decision is made by their insurance provider. Actually, anything that paints health care as a market commodity is going to put me off.
posted by she's not there at 12:39 AM on November 2, 2016 [3 favorites]
Shouldn't hospitals have this subject covered in spades by now? And if they want to improve in this regard, surely they can find researchers who already know a thing or two about structuring interviews with this population.
They should, but they haven't and they can't.
There are very few well documented studies, and it is almost funny to see the huge impact they have had on hospital design internationally: one study has shown that a beautiful view improves healing, so now there is always money for landscaping in hospital projects. Another study is about how the color of the artificial light in wards correlates with nurses health, so now a lot of projects have smart lighting in the brief. There are a few more, but you get the gist: you'll have huge, ugly, disorganized hospitals with stressed out staff and hopeless way-finding, but with nice parks and excellent lighting.
I do UX in hopitals as part of my research, when I can find the funding, the staff and the hospital for it. When I have results, they are in demand, but till then, it is a very steep hill to climb.
First of all, funding is hard to get because any board of any foundation supporting health-related research would rather give to cure cancer or save all the children, which is fair enough, though IMO shorter and more succesful experiences in hospitals seem to be a positive agenda, too.
Second, funding is hard to get because there are tons of unethical fraudsters within UX and everyone knows it. Though the project in the article seems friendly, it also seems edgy in terms of ethics. There is a huge difference between working with consumers in a commercial setting and with patients and staff in hospitals.
This second issue is also at the core of the problems with finding the right staff and a positively inclined hospital.
I prefer to do it with graduate students who I teach and for whom it is important to get good grades. So they stick to the rules I give them, and neither violate any ethical norms nor cut any corners. They also need to be extremely polite and flexible and forward thinking. And not scared. In our very first project, a patient, a tiny baby, actually died.
Often, it is not possible to even get into a hospital. Management needs to be convinced that our work is useful, that the findings are sound and the methodologies are transparent, and that we confirm to their rules. Getting there can take months, and at the very least takes tons of documentation. Because hospital staff are wary of unethical fraudsters, they are reluctant to admit our researchers, even if management has approved. So the next step is finding the person in management who can persuade the head nurses in relevant departments to let us work there. And then hope that the less senior staff will not sabotage it all.
When all is done, the research has to be documented and presented to the staff and management before publication. This is where the strategy of having grad students as staff becomes less useful. Because they have other stuff they need to do as well, but if I have been really lucky, there will be one or two assistents to help me go through hours and hours of raw data, help me anonymize the patients consistently and produce a presentation.
Then, everyone will be happy! Management will so much use it and as in the article, staff will begin sharing their own experiences and I will be proud, and the grad students will get good grades. And then management will say: but this can only be for internal use and we need repeated studies. The first news is really bad, because how will I get funding if I don't publish? The second news is good, maybe, but not really, because in spite of all the common joy, I have to start over from scratch, even if it is the same hospital, and all the steps that could go wrong first time can go wrong again.
For 12 years of this work (on and off, depending on funding), I have almost nothing to show. However, those internal reports have been used and shared within the local health organisations, and I can see some very direct results, so it's not all bad. And now I'm starting on a five-year long psychiatry project, where I am thinking about how to get around the problems with we know already will be there.
posted by mumimor at 3:52 AM on November 2, 2016 [10 favorites]
They should, but they haven't and they can't.
There are very few well documented studies, and it is almost funny to see the huge impact they have had on hospital design internationally: one study has shown that a beautiful view improves healing, so now there is always money for landscaping in hospital projects. Another study is about how the color of the artificial light in wards correlates with nurses health, so now a lot of projects have smart lighting in the brief. There are a few more, but you get the gist: you'll have huge, ugly, disorganized hospitals with stressed out staff and hopeless way-finding, but with nice parks and excellent lighting.
I do UX in hopitals as part of my research, when I can find the funding, the staff and the hospital for it. When I have results, they are in demand, but till then, it is a very steep hill to climb.
First of all, funding is hard to get because any board of any foundation supporting health-related research would rather give to cure cancer or save all the children, which is fair enough, though IMO shorter and more succesful experiences in hospitals seem to be a positive agenda, too.
Second, funding is hard to get because there are tons of unethical fraudsters within UX and everyone knows it. Though the project in the article seems friendly, it also seems edgy in terms of ethics. There is a huge difference between working with consumers in a commercial setting and with patients and staff in hospitals.
This second issue is also at the core of the problems with finding the right staff and a positively inclined hospital.
I prefer to do it with graduate students who I teach and for whom it is important to get good grades. So they stick to the rules I give them, and neither violate any ethical norms nor cut any corners. They also need to be extremely polite and flexible and forward thinking. And not scared. In our very first project, a patient, a tiny baby, actually died.
Often, it is not possible to even get into a hospital. Management needs to be convinced that our work is useful, that the findings are sound and the methodologies are transparent, and that we confirm to their rules. Getting there can take months, and at the very least takes tons of documentation. Because hospital staff are wary of unethical fraudsters, they are reluctant to admit our researchers, even if management has approved. So the next step is finding the person in management who can persuade the head nurses in relevant departments to let us work there. And then hope that the less senior staff will not sabotage it all.
When all is done, the research has to be documented and presented to the staff and management before publication. This is where the strategy of having grad students as staff becomes less useful. Because they have other stuff they need to do as well, but if I have been really lucky, there will be one or two assistents to help me go through hours and hours of raw data, help me anonymize the patients consistently and produce a presentation.
Then, everyone will be happy! Management will so much use it and as in the article, staff will begin sharing their own experiences and I will be proud, and the grad students will get good grades. And then management will say: but this can only be for internal use and we need repeated studies. The first news is really bad, because how will I get funding if I don't publish? The second news is good, maybe, but not really, because in spite of all the common joy, I have to start over from scratch, even if it is the same hospital, and all the steps that could go wrong first time can go wrong again.
For 12 years of this work (on and off, depending on funding), I have almost nothing to show. However, those internal reports have been used and shared within the local health organisations, and I can see some very direct results, so it's not all bad. And now I'm starting on a five-year long psychiatry project, where I am thinking about how to get around the problems with we know already will be there.
posted by mumimor at 3:52 AM on November 2, 2016 [10 favorites]
As a ux professional who spent last night in the ER for a broken ankle, this was crazy timely, so thanks ;)
Seconding mumimor's point about it being hard to convince hospitals of the value of UX. But then it is hard to convince ANYONE of the value of UX. I've had to make a case for it to open source dev teams, foundations, and corporations alike. I've gotten resigned to the idea that this convincing will always be part of my job.
Particularly at hospitals, it feels like the challenge may be one of explaining the value of good qualitative research. I've had to make this argument to devs as well. Many people who believe they are skeptical "hard" scientists are convinced that there's no such thing as rigorous qualitative research, because social sciences are "just too squishy." And yeah, no doubt this is in part fostered by exposure to people you or I might call "unethical fraudsters." Plenty of marketing, business, and design research has little to no methodological rigor backing it up. (There. I said it.) Those of us who have spent time engaging directly at advanced levels with critique of methods, in whatever field, may have a broader spectrum of disciplines we'd tar with that brush (I'm in anthro, I'm basically done with top-down operationalizations of social structures, looking at you, mainstream sociology).
I've attempted to lay out the argument for the whens and whys of qualitative research to a roomful of hackers. This is the case that I think ux researchers may need to make for ourselves regularly, and simply.
At the same time, there /is/ a vibrant tradition of anthropology and discourse analysis in hospitals -- you just have to know where to dig for it, and it's not always connected to HCI/UX. The Languse mailing list would be one place to tap into that. The Georgetown Roundtable on Linguistics would be another. And I have at least one anthro grad friend who is working for Kaiser, who seem to be hip to the uses of qualitative research in both doctor-patient interactions and in their digital resources.
posted by gusandrews at 6:19 AM on November 2, 2016 [2 favorites]
Seconding mumimor's point about it being hard to convince hospitals of the value of UX. But then it is hard to convince ANYONE of the value of UX. I've had to make a case for it to open source dev teams, foundations, and corporations alike. I've gotten resigned to the idea that this convincing will always be part of my job.
Particularly at hospitals, it feels like the challenge may be one of explaining the value of good qualitative research. I've had to make this argument to devs as well. Many people who believe they are skeptical "hard" scientists are convinced that there's no such thing as rigorous qualitative research, because social sciences are "just too squishy." And yeah, no doubt this is in part fostered by exposure to people you or I might call "unethical fraudsters." Plenty of marketing, business, and design research has little to no methodological rigor backing it up. (There. I said it.) Those of us who have spent time engaging directly at advanced levels with critique of methods, in whatever field, may have a broader spectrum of disciplines we'd tar with that brush (I'm in anthro, I'm basically done with top-down operationalizations of social structures, looking at you, mainstream sociology).
I've attempted to lay out the argument for the whens and whys of qualitative research to a roomful of hackers. This is the case that I think ux researchers may need to make for ourselves regularly, and simply.
At the same time, there /is/ a vibrant tradition of anthropology and discourse analysis in hospitals -- you just have to know where to dig for it, and it's not always connected to HCI/UX. The Languse mailing list would be one place to tap into that. The Georgetown Roundtable on Linguistics would be another. And I have at least one anthro grad friend who is working for Kaiser, who seem to be hip to the uses of qualitative research in both doctor-patient interactions and in their digital resources.
posted by gusandrews at 6:19 AM on November 2, 2016 [2 favorites]
gusandrews, I'm looking forward to seeing the vid during the weekend!
I've done a lot of cross-disciplinary stuff, both research, management and refs, and in my experience, anthropologists are the best at theory/method across the board. We always need more anthropologists (not an anthropologist myself). Nearly all the bad UX I've run into are people from other disciplines who do not excel at their original field, such as proces engineering, and then found that there was an endless demand for marketing, business, and design research fluffy stuff. And they really make life hard for the rest of us. Seriously, I once spent some time with a major private research investor, who had been cheated out of a big wad of money by some people I could quickly guess who were. He was incensed! Even the 5-6 years later when I met him. And he is never going to pay for qualitative research again.
I have more terrible stories, but I should really get back to worrying about that election I can't vote in.
posted by mumimor at 9:34 AM on November 2, 2016 [1 favorite]
I've done a lot of cross-disciplinary stuff, both research, management and refs, and in my experience, anthropologists are the best at theory/method across the board. We always need more anthropologists (not an anthropologist myself). Nearly all the bad UX I've run into are people from other disciplines who do not excel at their original field, such as proces engineering, and then found that there was an endless demand for marketing, business, and design research fluffy stuff. And they really make life hard for the rest of us. Seriously, I once spent some time with a major private research investor, who had been cheated out of a big wad of money by some people I could quickly guess who were. He was incensed! Even the 5-6 years later when I met him. And he is never going to pay for qualitative research again.
I have more terrible stories, but I should really get back to worrying about that election I can't vote in.
posted by mumimor at 9:34 AM on November 2, 2016 [1 favorite]
Mumimor and gusandrews: I certainly admire your willingness to fight the good fight, but it does sound like you're both in for a very frustrating career. I hope you've already come up with coping strategies—it's tough to deal with the "nothing to show" for all your work. (Lesson learned through years as an urban planner, primarily in research-related positions, turning out reports that were frequently admired, but generally ignored.)
Good luck with that five-year long psychiatry project, Mumimor. Last year someone I'm close to was taken to 3 different hospitals (all with outstanding reputations) for 5 different psych emergencies and each time admitted to the pysch/behavioral units for 3-7 days. I don't believe I'm overstating the state of things when I say that it appears that psychiatry is to other medical subspecialties as modern medicine is to the age of the barber surgeon. It would be very helpful if doctors were more upfront about what they don't know. The fact that getting this info is so difficult makes me suspect that there are systemic reasons for the evasiveness.
posted by she's not there at 11:20 AM on November 2, 2016 [1 favorite]
Good luck with that five-year long psychiatry project, Mumimor. Last year someone I'm close to was taken to 3 different hospitals (all with outstanding reputations) for 5 different psych emergencies and each time admitted to the pysch/behavioral units for 3-7 days. I don't believe I'm overstating the state of things when I say that it appears that psychiatry is to other medical subspecialties as modern medicine is to the age of the barber surgeon. It would be very helpful if doctors were more upfront about what they don't know. The fact that getting this info is so difficult makes me suspect that there are systemic reasons for the evasiveness.
posted by she's not there at 11:20 AM on November 2, 2016 [1 favorite]
The most important thing I'm taking away from the article is renewed gratitude that my people and I have had so few hospital-related experiences in this lifetime.
I come from an academic background where I've done lots of paperwork to get research through university institutional review boards. If someone proposed human subjects research where the subjects were to be:
A. Tethered to a pole that they had to drag everywhere with them, including to a bathroom barely large enough to fit them alone. Oh, and this object you're chained to will occasionally emit a series of shrieking beeps, which staff will ignore for anywhere from 20 minutes to an hour.
B. Cared for by a rotating cast of employees, few of whom you would ever see again.
C. Interrupted every two hours (including during the night) for various tests, medications, and room cleanings
D. Occasionally parked in a hallway for hours at a time
E. Told that it's time for them to leave, but then forced to wait an additional six hours or more for someone to sign on the dotted line that actually allows them to be released.
the IRB board would laugh this research out of the academy. Yet these are all things that have happened to me in my hospital stays. It's no longer a mystery to me why elderly patients often say they would rather die than go to the hospital.
posted by MsMolly at 11:37 AM on November 2, 2016 [2 favorites]
I come from an academic background where I've done lots of paperwork to get research through university institutional review boards. If someone proposed human subjects research where the subjects were to be:
A. Tethered to a pole that they had to drag everywhere with them, including to a bathroom barely large enough to fit them alone. Oh, and this object you're chained to will occasionally emit a series of shrieking beeps, which staff will ignore for anywhere from 20 minutes to an hour.
B. Cared for by a rotating cast of employees, few of whom you would ever see again.
C. Interrupted every two hours (including during the night) for various tests, medications, and room cleanings
D. Occasionally parked in a hallway for hours at a time
E. Told that it's time for them to leave, but then forced to wait an additional six hours or more for someone to sign on the dotted line that actually allows them to be released.
the IRB board would laugh this research out of the academy. Yet these are all things that have happened to me in my hospital stays. It's no longer a mystery to me why elderly patients often say they would rather die than go to the hospital.
posted by MsMolly at 11:37 AM on November 2, 2016 [2 favorites]
she's not there, thanks for the empathy and the thumbs up. I think the long haul is helping me do the research design for the psychiatry project, and I am quite hopeful - I already have really good contacts. And in a sense, what you describe makes psychiatrists more open to people who will help them combat that situation than somatic specialists.
I'd like to give one example of work we've done that has helped because it is such a nice story. A huge hospital near me is being renovated and extended, and a few years ago, the project manager there realized that there was no research at all on the patient experience in the whole multi-million project. I don't remember exactly how we met each other, but she helped me through the whole proces and I had the best students at the time, and everything clicked.
Now, one of the basic concepts of the project was that every patient should have a private ward. Management was adamant about this, and just about everyone on the ground was worried about the one size fits all approach, for a number of reasons. So there was a conflict, and in a sense, we were brought in as an attempt to change the dialogue.
We got to do prolonged qualitative and quantitive research in four different wards, and one of them was a ward for girls with severe eating disorders and/or kidney failure. There were four girls, and all of them had been hospitalized for several months. Their mothers were living there with them, at least part time, so it was a crazy place, with eight people in a four-bed ward. The thing is, these girls were mainly hospitalized because their families couldn't care for them, for both social and mental-health reasons. They were very seriously ill, but that wasn't why they were there. And the ward functioned as a collective or dormitory, where the girls learnt from each other as much as from the staff how to manage their problems. For these girls, the hotel-room style private ward would be a terrible solution, because it was the community that did the healing, not the medicine.
When I showed the documentation and our analysis to the staff, they got really excited and began telling about the good stuff they achieve in that department. And management began to listen, and they not only changed the plans for that hospital, but also built a new regional centre for these girls, on the basis of their need for companionship. I'm proud of that! In retrospect, I should probably have engaged with the head nurse for an international paper because this is 100% a nursing issue. But this was early on in my work with hospitals, and I was still blinded by the hierarchy in healthcare culture and looking for a medical doctor to engage in this.
Management, and the doctors agreed that this needed repeated research in spite of their practical approval and use of the study, and then failed with providing us with other, similar situations to study. On top of that, I couldn't find solid staff for the next study within that organisation, so I failed as well. I'm not saying it's easy.
posted by mumimor at 12:28 PM on November 2, 2016 [1 favorite]
I'd like to give one example of work we've done that has helped because it is such a nice story. A huge hospital near me is being renovated and extended, and a few years ago, the project manager there realized that there was no research at all on the patient experience in the whole multi-million project. I don't remember exactly how we met each other, but she helped me through the whole proces and I had the best students at the time, and everything clicked.
Now, one of the basic concepts of the project was that every patient should have a private ward. Management was adamant about this, and just about everyone on the ground was worried about the one size fits all approach, for a number of reasons. So there was a conflict, and in a sense, we were brought in as an attempt to change the dialogue.
We got to do prolonged qualitative and quantitive research in four different wards, and one of them was a ward for girls with severe eating disorders and/or kidney failure. There were four girls, and all of them had been hospitalized for several months. Their mothers were living there with them, at least part time, so it was a crazy place, with eight people in a four-bed ward. The thing is, these girls were mainly hospitalized because their families couldn't care for them, for both social and mental-health reasons. They were very seriously ill, but that wasn't why they were there. And the ward functioned as a collective or dormitory, where the girls learnt from each other as much as from the staff how to manage their problems. For these girls, the hotel-room style private ward would be a terrible solution, because it was the community that did the healing, not the medicine.
When I showed the documentation and our analysis to the staff, they got really excited and began telling about the good stuff they achieve in that department. And management began to listen, and they not only changed the plans for that hospital, but also built a new regional centre for these girls, on the basis of their need for companionship. I'm proud of that! In retrospect, I should probably have engaged with the head nurse for an international paper because this is 100% a nursing issue. But this was early on in my work with hospitals, and I was still blinded by the hierarchy in healthcare culture and looking for a medical doctor to engage in this.
Management, and the doctors agreed that this needed repeated research in spite of their practical approval and use of the study, and then failed with providing us with other, similar situations to study. On top of that, I couldn't find solid staff for the next study within that organisation, so I failed as well. I'm not saying it's easy.
posted by mumimor at 12:28 PM on November 2, 2016 [1 favorite]
This article seems 10 years out of date. The Cleveland Clinic was doing these focus groups long ago, and completely overhauled their hospital experience as a result. Also - it's totally false that no one visits hospital websites. The Cleveland Clinic website gets about 100 million visits a year. They have an Office of Patient Experience and chief experience officer who do nothing all day but study how to make patients happier, more comfortable and self-empowered. Here's an article about Cleveland Clinic's user experience "fanatics" from the Harvard Business Review.
Also, have you seen their "Empathy" video?
Cleveland Clinic holds a Patient Experience (read "user experience") Summit that brings all the people in healthcare who are passionate about this kind of thing together to share best practices. I go every year.
It's unfair to act as if hospitals don't care about this kind of thing, or as if they've never even thought about emotions in the patient care context. It's become a major concern in healthcare.
posted by Modest House at 3:20 PM on November 2, 2016 [1 favorite]
Also, have you seen their "Empathy" video?
Cleveland Clinic holds a Patient Experience (read "user experience") Summit that brings all the people in healthcare who are passionate about this kind of thing together to share best practices. I go every year.
It's unfair to act as if hospitals don't care about this kind of thing, or as if they've never even thought about emotions in the patient care context. It's become a major concern in healthcare.
posted by Modest House at 3:20 PM on November 2, 2016 [1 favorite]
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Another thing that bothers me is that people think UX is magic and empathy is something everyone else doesn't need to think about. Everyone at that client had their own hospital experiences and had the power to make it better but had just... never noticed it was terrible? Really? Yes I know people are terrible in general blah blah blah whatever. I just think everyone needs to open their eyes, not just "the creative people in plastic glasses and maryjanes" or whatever.
posted by bleep at 6:46 PM on November 1, 2016 [1 favorite]