Duration: 09.2023 - 03.2024 (6 months)
My Role: UX Researcher, Designer
Methods: Literature Review, Competitive Analysis, Field Study, Survey, Stakeholder Interview, Focus Group, Usability Testing, Ideation
Collaboration: Davy Guo(Product Manager), Yibo Shen(Developer)
Mentor: Jeremy Barribeau, Linda Wagner
Sponsor: Center For Dialysis Innovation(CDI)
To research and develop a solution for patients and/or clinicians, in patient homes and clinics, to increase the home hemodialysis(HHD) patient population.
Kidney failure requires dialysis. There are two options for the patients, in clinic and home.
There are 600,000 dialysis patients, 7% Medicare budget, 1% Federal budget
Home hemodialysis has a flexible schedule, better well-being, and greater control.
However, only 13% of patients choose home treatment, and 2% of dialysis patients doing home hemodialysis.
How can we design and develop an innovative solution for end-stage kidney disease patients undergoing home hemodialysis (HHD) treatment to promote patient independence and technology adoption and retention by improving user experience?
I decided to go through the literature review first to learn more about kidney failure, dialysis, why home dialysis, and what is already being done in this area. I went through more than 20 academic papers on devices, monitor systems, pain points, and vascular access areas. The product manager went through the business and finance area and the developer went through the dialysis machine construction. Then we met and collaborate to share our key findings in FigJam.
Key Findings
Home:
2-3 hours each time 5-7 times per week at home
Improved patient experience and outcomes (survival, morbidity)
Flexible schedule
No commute necessary
Longer sessions are more similar to natural kidney function
Can travel with HHD machine
More cost-effective for the provider
In clinic:
3-5 hours each time 3 times per week in a nearby clinic
Trained staff perform all aspects of treatment
Make friends with patients
Begin as soon as possible, no training is needed
Clinic nurses and technicians can deal with any machine or medical problem and emergency
The main barriers are Complex training & skills, Enigmatic UI, Perceived complexity, Self-cannulation, Lack of awareness, Safety concerns, Cost concerns, Home space & Infrastructure, and Burdened caregivers.
The potential areas are Making the machine GUI/CUI easy to interpret, Easy to operate, Increasing control, Building a sense of community, confidence, and trust.
Reference:
Bieber SD, Young BA. Home Hemodialysis: Core Curriculum 2021. Am J Kidney Dis. 2021;78(6):876-885.
Seshasai RK, Mitra N, Chaknos CM, et al. Factors Associated With Discontinuation of HomeHemodialysis. American Journal of Kidney Diseases. 2016;67(4):629-637.
After gaining a brief understanding of the problem, we discussed it with the CDI team and decided to focus on the patients' side. We aim to create a product that can help patients gain more control and confidence, and provide them with a sense of community.
With this goal, I come up with the primary research questions to discover more about the problem.
What is the process of HHD (Pre, During, After)? Any challenges? Feelings?
How does the current training, monitoring, emergency reaction, and support system work?
What are the reasons choose home or clinic dialysis?
What metrics can be used to monitor HHD?
What policies or regulations facilitate or prevent HHD?
To uncover this problem, I conducted a stakeholder analysis that helps comprehensively understand the complex ecosystem surrounding home hemodialysis. This includes not just the patients and caregivers, but also healthcare professionals, technical experts, and others who influence or are impacted by the process. Understanding these relationships and dependencies is crucial for defining the scope and direction of the research.
From the analysis, I understand the current ecosystem. Primary research to interview each stakeholder is needed to know the different stakeholders' needs and challenges.
Location: Northwest Kidney Center (NKC) where people do in-clinic hemodialysis
I observed what people do there, the supplies needed for dialysis, the technicians operating the dialysis machine, the setting of dialysis machines, and patients' behaviors.
Key Findings
Behaviors:
Most patients used tablets or phones, while some sat still; only one was eating.
Patients covered themselves with blankets for comfort and were limited to consuming ice due to fluid restrictions.
Depending on their vascular access type, patients may have one or both arms free, allowing some level of activity.
Environment:
The center includes a dialysis room for 12 patients doing dialysis at the same time, a prescription room storing different concentrations of dialysis fluids, and a water purification room.
The dialysis room was quiet except for some alarms from the machine which are varied and complex to decode.
Technicians and nurses:
Technicians didn’t know what the icons meant and were only told to tap on them.
The technician and nurse will set up, monitor, disconnect, and clean the dialysis machine.
Patient's attitude:
The patient did in-center because he can make friends with "neighbors".
Commuting to the dialysis center is like a job which is important for people who lost their jobs.
His reasons for in-center included pet ownership, fear of power outages, and plumbing issues.
After understanding the benefits and blockers of home hemodialysis, I organized a brainstorming session with our group members to discuss our next step.
We go through the user flow and the front-end stakeholders.
From the brainstorming, we found out that the training process before getting into home dialysis, the machine setup before dialysis, and the monitoring of the status and alarms during dialysis are what we can use technology design to help improve.
We came up with this opinion since we follow some of the principles like finding the stage that has few stakeholders due to time and resource limitations, and core and difficult stages that may block users.
At this time point, our team felt that improving the interface so that patients could deal with the alarm easily and also shorten the training process was important.
With previous assumptions, I decided to conduct stakeholder interviews to know the whole pages of the problem and whether our potential solution(monitor and emergency react system) works from different aspects.
Teresa L. Graham
HHD Training Nurse in NKC
Finding the training process is an area we can improve through technology, I designed questions to interview the training nurse to know more about the details of training and understand the current scenario, user experience, needs, how to evaluate the success of training, the current machine design, safety issue during HHD, long-term retention, and what can be improved using technology.
Key Findings
Responsibility:
Each training nurse manages approximately 10-15 patients.
Assess patients' homes for HHD feasibility before the training.
Train patients and their caregivers.
Monitor patients' dialysis sessions through remote data transformation.
Training:
One-on-one training lasts three to four weeks. Every day at the clinic from 8 am to 1 pm.
It covers steps from setting up to finishing, machine operation, emergency response, and self-cannulation.
Attitude:
The current machine is straightforward to use.
Training for four weeks is needed and necessary to learn the knowledge and information.
Nurses are necessary for training since they have medicare qualifications and can help patients without wrong information.
The shortage of trained nurses, long waiting times for training, and the need for more proactive patient education by doctors are significant barriers to scaling HHD.
Patient's Experience:
Most of the patients who undergo HHD feel better physically and mentally.
Patients' readiness and comfort with HHD evolve from feeling overwhelmed to becoming competent and confident. This progression is crucial for successful home treatment adaptation.
Dr. Robert Winrow
Nephrologist with 21 years of experience and promotes HHD
From the interview with the training nurse, I learned that a patient's decision to choose home hemodialysis is primarily influenced by the education and information provided by their doctor. Most patients become aware of the home dialysis option only after it is introduced by their healthcare provider. So it is important to talk with a nephrologist to see what kind of information is important for patients making a choice, the challenges for patients to choose home dialysis, the user experience from a nephrologist's perspective, and what can be improved using technology.
Key Findings
Responsibility:
Present the home options to patients although they refused at first. Highlight the importance of patient autonomy during home care.
Emphasize patients' life quality with home care and shared decision-making process.
Blocker:
Some nephrologists may not present home options to patients due to safety concerns, their training background, or bill issues.
Training for home hemodialysis is extensive and long.
Fear, denial of disease severity, and the perceived burden of treatment are significant barriers.
Innovation and improvement:
Shorter training program.
User-friendly and intuitive interface that makes patients feel comfortable and informed.
Easy and accessible for older patients.
Machine and training processes are difficult for non-English speakers.
Providing more information about dialysis and its process before patients begin treatment.
Retention:
There are a lot of things (Needle placement, isolation, storage, etc.) patients and their caregivers need to do with HHD which may cause burnout and back to the clinic.
The impact on the relationship with caregivers.
Patient Advisor Board from CDI
Building on insights from interviews with the training nurse and nephrologist, I held a focus group with patients to explore their experiences with HHD. The earlier interviews underscored the importance of healthcare education in patient decisions towards HHD. This focus group aimed to gather patient perspectives on the reason for making choices, the experience of the whole process, and what can be improved.
Key Findings
Choice:
Don't want to do HHD due to fear of needle (5 of 5 mentioned)
Peritoneal dialysis allows a flexible schedule that can work full time.
4 of 5 patients were informed before decision through medical experts and courses.
Training:
Wait time is long, training sessions are long. (4 of 5 mentioned)
It requires a caregiver to participate so they can't work.
Better UI can reduce training time.
Integrate remote training. (3 of 5 mentioned)
Emotional changes:
Depression (5 of 5 mentioned)
Tension in the intimate relationship since the role of caregiver and patient.
Need for better mental health support.
Community:
Patients know each other and have a sense of community to support each other.
Most of the patient are open-minded to new technology and can represent others in the kidney disease area.
Barry N. Fulkerson
Systems Engineering
Since we wanted to change the machine's user interface and develop a better alarm system that can ease the users' burden from training and during the dialysis monitor, I scheduled an interview with a technical expert who was the director of electrical and software development with the current in-market machine. This interview aims to know the backend of the dialysis machine and the possibility of changing the user interface or integrating a plug-in to improve the user experience.
Key Findings
Design of the machine:
Focus on a design to simplify use and integrate a user-friendly GUI for handling complex instructions and alarms.
Implementations of touchscreen and push buttons ensure that settings cannot be accidentally changed, enhancing user confidence and allowing shorter training sessions.
Technical challenges:
Data transformation and security issues blocked the real-time connection.
Setting up the wireless system is difficult and cybersecurity needs to be considered.
FDA has strict standards for medical machines and access to data.
Competitors:
Outset: approved by FDA two years ago but is slow in adoption with larger size and expensive price.
Quanta: submitted the home trail data to FDA but will not be approved until mid-next year. It is the same size as NxStage machine but needs a larger reverse osmosis system for the water filter. et. Nunc ut sem vitae risus tristique posuere.
Business model:
The providers cover the dialysis machine and therapy. The patients pay for their water and electricity bills.
In the US, dialysis clinics could not survive if they didn't have private pay patients. 80% of the profits are made from 20% of the patients in the clinic.
After interviewing, I used an affinity map to summarize the insights and classified them into five categories. From the affinity map, we discovered that feelings and emotions are the most significant aspects that influence patient experiences.
Furthermore, we identified different solution assumptions related to managing feelings and enhancing training, pointing to potential areas for improving emotional support and educational strategies. We conducted a brainstorming session and metric analysis to establish design requirements, focusing on self-cannulation—a process mentioned by all patients in the focus group and expert interviews as a major cause of burnout and dropout. It also emerged as a significant barrier in the training process, requiring a lengthy learning period yet often overlooked by training nurses.
More control and flexibility in daily life
Less training and waiting time
Better physical and mental health
Patients' safety during the dialysis
Better treatment outcome
Less burnout and dropout
Support and help the patients
Have their own life
Keep a health relationship
Ensure patients learn all the knowledge
Less side work and more time on training
Less cost
High adoption
Easy to add to the current training process
Can be continued in the future
Not only an application or change design
Evidence-based product
How can we assist dialysis patients and caregivers in overcoming their apprehension towards and honing their skills in self-cannulation, before and during training, in the clinic and at home, to enhance the adoption of home hemodialysis?
With those insights, our team had a brainstorming session to find possible solutions to solving those needs. We first came up with a way to overcome fear from different categories like psychotherapy, support, distraction, relaxation, medication, and techniques. Based on the brainstorming, I developed an Effort-Value metric to compare and organize those ideas based on the group's strengths and values. The Upper-left will be the sweet spot for us while the upper-right is the moonshot ideas that we can not finish in this six-month project.
Building on our initial findings and the ideation phase, I plan to conduct a second round of primary research that focuses specifically on the cannulation process. This next phase is aimed at deepening our understanding of the challenges with cannulation, to identify key areas where interventions can be most effective.
MD. Jonathan Himmelfarb
Researcher, Physician, Co-founder
To deepen our understanding of vascular access methods for hemodialysis, I conduct expert interviews with the nephrologist and kidney disease researcher, focusing on the technical and procedural aspects of vascular access for hemodialysis including fistulas, grafts, and catheters, and the way to choose and build each of it also the specific challenges in cannulation. I also explored the need to successfully cannulate with different access methods from the expert perspective and explore the possible solutions.
Key Findings
Basic information on dialysis access types:
Arteriovenous (cannulation): Fistula & Graft
v.s.
Central Venous Catheter (no cannulation)
Before: fistula > graft > catheter
Now: the one fulfills the patient's needs and wants
Technological exploration:
Vein mapping and imaging technology were used in pre-surgical planning and may be used in future cannulation.
The material and design of the needle can reduce the risk, of infection and fear.
Patient experience:
Experienced patients often prefer to cannulate themselves or have a consistent caregiver perform the procedure to ensure comfort and reliability.
The access can be seen with eyes, heard with the stethoscope, and felt when a needle is in there.
Research perspective:
Long-term impact and development may shift the dialysis process.
FDA regulations may affect patient care practices.
The automated connect system that eliminates needles can simplify the process and enhance the adoption.
Marcy Valencia
HHD Training Nurse in NKC
Referred by training nurse Teresa, I reached out to the training nurse in an ongoing training session to observe and gain a deeper understanding of the current HHD training processes. This observation aimed to identify potential areas for integration and enhancement with our innovative product. By interacting with the training nurse and patient, I got firsthand insights into their challenges and the effectiveness of existing practices, aiming to ensure our product could meaningfully improve the training experience and overall patient care.
Key Findings
Training routine:
Training nurses followed predetermined rubrics and syllabi, potentially neglecting the individual emotional experiences.
Patients are taught the technical aspects of self-cannulation in the initial weeks but only begin practical application in the second week of training.
Patient's experience:
Patients are required to perform self-cannulation without any practical experience, aside from observing nurses perform the procedure. Although the clinic possesses a fake arm designed for practice, it is often unavailable because the nurse cannot find it.
Although we gathered valuable insights from interviewing the Patient Advisory Board, conducting a broader survey is essential to obtain large-scale insights and ensure our findings are representative of the diverse patient population. Relying solely on the PAB may lead to a limited perspective and potential bias, as this group often does not capture the full spectrum of experiences and challenges faced by all patients.
The survey contains basic information like the modality and vascular access methods, experience and feeling with self-cannulation, fears and concerns, ways to overcome fears, and whether they are willing to participate the future prototype testing.
Key Findings
Statistic Result:
Publish platform: Facebook group, Reddit, Help with PAB
Sample size: n = 21
Experience with HHD = 17
Need cannulation (Vascular access method not only catheter) = 19
Emotion:
Cannulation has a severe emotional impact on patients. The trauma of cannulation goes beyond physical pain to include deep psychological distress.
83% of patients felt fear when they first started self-cannulation.
Fears:
The most common things they fear are incorrect needle placement and pain.
Methods to overcome:
Keeping practice and peer support are the most helpful resources in overcoming their fear which confirmed our previous product assumption.
Based on two comprehensive rounds of research, it has become evident that the fear of self-cannulation and the corresponding need for emotional support are critical issues that our innovative solution must address. The findings from our second round of primary research particularly highlighted that most patients experience significant anxiety regarding the self-cannulation process. To alleviate this fear, patients expressed a strong desire for more practice opportunities and emphasized the importance of both professional guidance and peer support. This understanding directly informs our product development, leading us to design a solution that not only facilitates easier self-cannulation but also integrates support mechanisms to enhance patient confidence and emotional well-being.
The main barrier for patients to avoid HHD is the fear of self-cannulation and the fear of the needle. In this case, the most practical method is to provide a psychotherapy session to help patients overcome their fear.
In the interview with PAB and observations in online communities like Reddit and Facebook group, the sense of peer support and advisor dominate the group and patients rely on those experienced peers.
Practice makes perfect. to hone their skills, practice in a safe and controlled environment, building their skill and confidence before performing the procedure on themselves.
Combining the previous three concepts we wanted to finish, our group drafted some basic design features.
A peer mentor therapy chatbot guides users through personalized self-paced exposure therapy and helps them overcome the fear of self-cannulation complemented by a physical practice component to enhance their cannulation technique.
In the initial version of our project, I developed an interactive therapy prototype aimed at helping users overcome their fear of needles. This prototype was designed to validate the concept that such a tool and the concept of a peer-mentor chatbot could effectively assist patients. I employed cognitive walkthroughs to assess patient attitudes toward the concept and gather insights on potential enhancements for subsequent iterations.
More Coming Soon!
