The journey of assisted fertility (conceiving a baby through medical assistance) is a lonely and stressful one...a roller coaster of challenging emotions that, as experience designers, we hoped to smooth out.
Aliza Gold and Kijana Knight, senior designer / researchers at projekt202: a design and innovation firm, initially gave this presentation on March 26 at the Healthcare Experience Design Conference 2013. It is a case study of a service design and research strategy project for a fertility clinic: Reproductive Medical Associates of Texas (RMATx).
RMATx came to projekt202 for help with creating an excellent experience for patients of their clinic as they were planning and beginning construction on a new clinic in Austin, TX (their first two clinics are in San Antonio).
The team conducted participatory interviews with staff and interviewed patients to build understanding and develop insights. Using what we learned through our analysis / synthesis process, we created a patient journey map, a proposed layout, storyboards for concepts, guiding principles, and a program of the space document. The presentation walks through what we did and discovered, and our recommendations to the clinic. After the HxD presentation, a designer who works with post-traumatic patients said that our findings mapped well to his work and likely to other medical conditions.
7. I could not believe that there could be that much
medicine I would need to take. I immediately felt
overwhelmed and thought what the heck am I
doing. I took all the boxes in the garage and waited for
Pete to come home.
I called RMA to talk with my nurse Rachel and was told
she no longer worked at RMA. I start panicking a
little bit because Rachel had such a soft, caring
demeanor. RMA is currently training a new nurse but
unfortunately, a specific nurse is not assigned to my
case yet.
Source: http://www.sharsfertility.com
8. c photo credit: ttp://www.flickr.com/photos/amagill/2120228928/
STRESS + EMOTIONS
9. a smoother patient experience
c photo credit: http://www.flickr.com/photos/21992612@N03
37. Patients need quality and consistent individual care.
1 Free up fertility coaches to
focus on 1-on-1 interactions
with patients.
2 Provide patients with
dedicated care teams.
38. The staff are a critical to the practice ecosystem
and patient experience.
3 Improve consistency and
efficiency.
4 Increase communication
between staff and patients.
5 Prioritize training for staff.
39. The clinic couldn’t do everything,
so help patients help themselves.
6 Create additional
opportunities for patients to
get emotional support and
tools to educate themselves.
Let’s pretend:You’re part of a young couple – you got married a year and a half ago and now you’re thinking about having kids. So you start trying (the fun part – right?)….
Eight months later, you start thinking: “This isn’t working – let’s see what we can figure out.” After some trips to specialists and some tests, you get some hard news:
As a couple, you are infertile.
A study found that an infertility diagnosis has a similar emotional effect to being diagnosed with cancer, HIV, etc. [1993, Domar, Zuttermeister, Friedman]. When people are faced with infertility, they sometimes choose the assisted fertility route…
Enter someone likePaco – Dr Arredondo, known as Paco to his friends and colleaguesMedical director of the Reproductive Medical Associates of TX, or RMA, in San AntonioHe’s a fertility specialist, entrepreneur, and a deeply caring person. He’s passionate about everything he does, and Great sense of humor: sperm car – drive around San Antonio, Paco is even known to wear a sperm-shapedlapel pin.RMA has 2 clinics in SA, TXCame to us when planning to build a new clinic in Austin
Paco had been approaching this patient journey from a fresh perspective and he wanted us to do the same.He gave us an early peek into this journey by providing us with a blog written by one of his former patients. It was abundantly clear from her blog that the assisted fertility process including IVF (in-vitro fertilization) was a very tough process for her to endure.
Maybe you have or you haven’t gone through this particular process (ART).However, we’re sure you can still relate. This is what we had to do.Have you ever had a crisis in your life that made you feel like you were on a rollercoaster of stress and emotion? Maybe you or someone you were close to had an illness? Or you were trying to sell a house while you moved across the country? For a few seconds, put yourself back in that situation…Can you feel a tightness in your chest or diaphragm? Maybe your heart is pounding a little harder, your palms are sweating, you’re having problems catching your breath… All you can focus on are the feelings of bewilderment and anxiety. Do you remember moments of fear? And maybe relief?A rollercoaster has high highs and low lows. Back to our first story: When you’re looking forward to having your first child, you are way up here [show with hands]. When you get a diagnosis of infertility the rollercoaster has plunged to the bottom. And the process of trying to get pregnant with assisted fertility methods after that is very much an emotional rollercoaster
We recognized early on that we could not eliminate the rollercoaster – this was an inherently emotional experience that would be different for everyone.However, could we minimize those steep drops and sharp turns? Could we loosen up that tight knot that’s in the pit of our stomachs when we anticipate the next jerk around the curve?Our mission was to improve the patient experience during this process…… to take that rollercoaster and smooth it out so it was more like a drive in the Texas’ hill country than that rickety wooden screamer at the amusement park.
First, let’s take a quick step back and take a cool-headed look at some facts about fertility.
Judging from the skyrocketing number of humans on this planet, you would think making a baby is easy.
A 2011 fertility awareness survey found that out of 1000 women aged 25 to 35 who had talked to doctors about fertility, that less than 50% of them could correctly answer seven out of 10 basic questions about fertility. Women were wrong most often about how long it takes to get pregnant — and about how much fertility declines at various ages….The executive director of RESOLVE, the national infertility association, who administered the survey, said that “Most women simply don’t realize that at 30, a healthy woman has about a 20 percent chance of conceiving per month and by the time she reaches 40, her odds drop to about 5 percent.” There is a serious knowledge gap about fertility.
Infertility affects some 7.3 million women in the United States, or 12 percent of the child-bearing female population, and about 1 in 8 couples, according to the Centers for Disease Control and Prevention(2002 National Survey of Family Growth). That means that while research has shown that most married women expect to have a child, more than 10 percent aren’t able to. People expect to have families, and it can be devastating not to be able to one make one yourselves.
Fundamentally, people can come to question their very purpose in life.When faced with this situation, many people want to do something about it: to find a cure…That’s what we’ve come to expect in this day and age.In fact, in that same fertility awareness survey, 64% of the women said that they would seek medical help if they had trouble conceiving.
Assisted fertility clinics are measured on their IVF success rates, however, as our client explained to us, everyone has the same technology so those success rates are not really a differentiator. The way for a fertility clinic to set itself apart is through the experience it provides to couples who are trying to have a baby…So our client, forward-thinking as he is, told us that he wanted to differentiate his clinics on the experience: to improve the fertility journey for his patients. Image attribution: Superflewis , creative commons, http://commons.wikimedia.org/wiki/File:Sun-behind-clouds.JPG – this image isn’t that great – there are lots more in the creative commons google image search for sun and clouds
Improving the journey for patients considering that the ecosystem of a service involves a number of elements: the space, which Paco considered especially important, and in fact he initially presented the project to us as one of designing a great new space for the Austin clinic. The technology used by the patients and staff, the communication process, the education processes, billing procedures, etc.
Now, to rethink the fertility journey at RMA, we had to dig in to understand what was happening: both what patients were experiencing, and what was happening behind the scenes.
We worked with the staff - conducted participatory interviews, talked about a the space using a hand-drawn map.Staffers were eager to explain problems that hampered their workWe observed the clinic during the very busy hours.We took a tour of the lab and saw the fertilization of a human egg in a petri dish, and were awed by the sheer science miracle.
We talked to doctors, nurses, lab staff, front desk staff, and the stakeholders. One of the most striking things we heard was from the nurses who play the role of “fertility coach” at RMA. They are the touchstones for patients and have a lot of contact with them. They felt they were very overloaded with work, and needed another nurse to make it work. As it was, they complained of not being able to provide the care they wanted to for patients, and that was distressing and frustrating for them.
The more we related with people, more we saw through eyesSee each group: patients and staff from the others’ perspectiveThese discussions also gave us insight into some of the problems that RMA was hoping to mitigate.
Once we had our data, we could start to look at key touchpoints where issues at the clinic impacted the patient experience. Where was RMA inadvertently adding to the emotional rollercoaster of the patient?One thing was for certain: that everyone at RMA cared a lot and were enthusiastic participants in the clinic. They were not intentionally making the patient journey hard, but the complexity of the entire system was bigger than their good intentions
For instance, take a fertility coach. Patients expect her to be there to answer all their questions, sympathize with them, comfort them, guide them…But when we modeled her workflow, it became clear that she had WAY too much to do.
There were issues with the clinic space: mostly architectural problems that caused traffic jams and other problems that affected patients’ experience while in the clinicThe billing area was in a public space, which made emotional conversations difficult
Sometimes, it’s not anything the clinic was doing wrong:They could just be doing more to support patients’ needs.For so many people, the fertility journey is a lonely one. It challenges couples’ relationships, friends & family can’t relate at best / judgmental at worst, and as you heard…people have some strange ideas about how to get pregnant (just get drunk).People tend not to talk about it, which makes a hard thing even harderThis isn’t anything the clinic was causing, but could be providing opportunities for patients to connect with each other
One thing that was clear was that issues that patients were dealing with had a variety of sources. It wasn’t one issue or problem at the clinic or in society, it was a multitude. These all contributed to the rollercoaster – all these small experiences along the way.
With every research project, there are surprises. Your perspective shifts when what you guessed at the start doesn’t match up with what you’ve learned at the end.
Biggest shift – from focus on the space to finding that the biggest problem that affected patients was that the nurses were not able to have as close a relationship to the patients as they needed to. Fundamental need for human touch and connection
Some perspective shifts came from other experts who we worked withAn interior designer [Rebekah Gainsley] came with us and saw a possibility in the construction space that nobody else had: that a window at the end of the office could be left unobstructed, shining down the corridor to represent “the light at the end of the tunnel.” Patients in the fertility process need hope – they need to believe in the possibility that they can conceive and this light would symbolize that in a subtle way.
Another provider - owner of a reproductive acupuncture clinic [Kirsten Hurder-Karchmer] with whom Paco had partnered Before talking to her, we had thought of the clinic’s offerings of acupuncture and therapy as “holistic” offerings. Something they could market more and maybe offer as packages. Acupuncture clinic owner showed us the importance of wellness as not being something just to offer patients, but something that the clinic could embrace as a whole. Wellness is a principle that could be practiced from the top down – from Paco providing the example by not overworking himself to fresh flowers in the waiting room.
For the clinic to embody wellness is one opportunity to address the well-being of patients as they go through this process.
The patient journey map provides a holistic view of the themes we heard from patients…the emotional phases, as well as the medical milestones in the process.The problems and issues, the breakdowns are shown for each phase, andthis allowed us to map the opportunities directly to the patient experience[Top] Here is a close-up of the patient themes – what people are experiencing at each phase[Next] these are the medical milestones of the process – steps in the journeyIf after the pregnancy test, you haven’t conceived, you can start the process againPaco and other nurses and staff who have been in the fertility process for a long time know journey well. However, people coming into the fertility field, even if they’re well trained, don’t have the understanding that the long-timers do. So the patient journey map will help provide a holistic view of what patients are going through – the emotional phases as well as the medical milestones in the process. [Mike: Kijana is making a more abstracted version of this, and we’re also open to your thoughts about how to make it readable (zoom in?)]
Here is a close-up of the patient themes – what people are experiencing at each phase
These are the medical milestones of the process – steps in the journeyIf after the pregnancy test, you haven’t conceived, you can start the process again.
Altogether we identified opportunities and made recommendations that spanned education, communication, technology, the space, and created a set of principles for RMA to use to guide decision making in the future. These recommendations were all filtered through the lens of what would have the most impact on the patient experience.
The first two of our six guiding principles centered on giving patients the quality and consistency of individual care they needed. Things like freeing up fertility coaches and providing patients with dedicated care teams related to some of the most pressing problems patients were having and things causing them the most distress.
We couldn’t forget the staff! They were a very important piece of the practice ecosystem and the patient experience.The next three principles related to organizational improvements RMA could make to support the first two principles and improve the staff’s experience.
RMA couldn’t do everything for the patients – patient’s contact with RMA was a relatively small part of their whole lives. RMA could support patients by providing education and opportunities for them this could be everything from iPads in the waiting room with informaiton about the assisted fertility process Give patients tools outside the officehosting patient panels and support groups for patients to get connected to other people going through the same process.
Because lots of small experiences add up to a patient’s overall experience, every individual step RMA takes and every evolutionary improvement will help toSmooth out the emotional rollercoaster patients are on throughout the assisted fertility process…Though we know there will still be ups and downs.
Ultimately, for the work of empathy to be embodied at RMA, systems will be set up to enable meaningful relationships between patients and staff. As designers, let’s keep pushing toward a sea-change where patients and staff experiences are understood and cared about. This would be a huge shift for healthcare – if empathy for patients and staff drove decisions in healthcare organizations.