Methods

Overview

The information on this page provides an overview of our adapted collaborative research process for conducting interviews with single-ventricle congenital heart disease (SV CHD) patients, their parents, siblings, and significant others for Project Corage. Aspects of the process that were specifically adapted including the capturing of information during interviews, the analysis of what was shared with the design team using various tools, and how we made our maps as the output of and method for working through synthesis.

Project goal

Project Corage is a three-party collaboration involving the Texas Center for Pediatric and Congenital Heart Disease, the Value Institute for Health and Care, and the Design Institute for Health at Dell Medical School. This collaboration aims to understand how patient insights, data, storytelling, ideation and prototyping can be employed to improve the life of people with SV CHD and their families. The goal of Project Corage is to chart the life-long journey of people with SV CHD and identify areas of that journey that can be improved upon. We specifically seek to gain a better understanding of the physical, psychological, and practical aspects of the journey and challenges faced by people living with SV CHD and their families in order to design interventions to improve the care provided to them throughout their lifetime. This collaborative effort brings together expertise in health care design, value-based health care, and clinical care, thereby allowing the team to analyze the SV CHD journey with a unique lens and develop innovative solutions.

PHASES OF THE DESIGN PROCESS

UNDERSTAND

Experience Group Research

Experience Group sessions, led by the Value Institute for Health and Care, are based on the principle that a rich understanding of a patient’s true, lived experience is critical to designing effective, compassionate, patient-centered care. This methodology puts patients in the role of the expert and uses insights from conversations to inform health care design. Experience Group sessions enable teams to define the outcomes that matter most to patients and families, while also developing an understanding of their unmet needs and the gaps in care.  

Experience Group sessions last approximately 90 minutes and include 3-7 participants. Project Corage participants each took part in only one session. The sessions were separated into the following cohorts:

Parents (age of patient)

o   Age 0-12

o   Age 13-17

o   Age >18

Patients

o   Age 8-12

o   Age 13-17

o   Age > 18

Siblings

o   Age 8-12

o   Age 13-17

o   Age > 18

Pregnant parents (prenatal diagnosis)

Partners of adult patients

In Experience Group sessions, facilitators prompt discussions with general open-ended questions, such as “what does a good day look like for you?”, “what does a bad day look like for you?”, “what are your goals?”, or “what does success look like?”. The discussions focused on everyday life, as well as the patient or family member’s experience with the health care system. Discussing the lifestyle aspects enabled our team to gain insights into the successes and challenges faced outside the health care system and in unobservable situations.

Sessions were conducted in both English and Spanish. Initially, sessions took place in-person before shifting to virtual sessions conducted via Zoom due to the Covid-19 pandemic. Each session included one primary facilitator and one secondary observer. Facilitators without clincial backgrounds were specifically selected to create a space where participants were positioned as the primary experts of their condition. Given the absence of clinicians in the room, participants were also enabled to speak candidly about both positive and negative experiences with their health care.

A total of 33 Experience Group sessions and six one-on-one interviews were conducted with 79 families. There were 140 total individual participants. The breakdown of participants is illustrated in the diagram below.

Design Research 

We are inspired by people. Just about every project the Design Institute for Health does starts with understanding people, their motivations, and their stated and unstated needs. The initial plan for Project Corage was to conduct contextual interviews, that is, meeting patients and families in context — at their homes, place of work, or a location where they feel comfortable. Contextual interviews provider rich insight into patients’ lives, which also come from non-verbal cues from the environment. Because of the COVID-19 pandemic, seeing people in-person, in their natural environment, was no longer possible. We strove to recreate online the casual conversations we would have had with patients in person. 

We also made use of Challenge Cards, which illustrate common situations in the life of a person with SV CHD, as a prompt to get the participants to talk about their own experience.

The interviews were of two types: “looking-in”, when we interviewed internal stakeholders at Dell Medical School and the Texas Center for Pediatric and Congenital Heart Disease; and “looking-out”, when we interviewed patients (if they were at the appropriate age), families and other external stakeholders. Among the stakeholders interviewed were:

• Families of children with single-ventricle CHD

• Adolescent and adult patients and their families

• Providers (doctors, surgeons, nurses, nurse practitioners, etc)

• Psychologists, social workers, and other psycho-social specialists

• Physical therapists and other allied health specialists

• Administrators

Interviews

• We conducted 18 interviews with providers and 29 interviews with patients, parents, and significant others.

• We used Challenge Cards as a prompt to encourage difficult conversations.

• We spoke to a wide variety of providers and, to both English- and Spanish-speaking patients and significant others.

• We used Zoom to facilitate these interviews in place of conducting Contextual Inquiries in person as initially planned

• As a team we took turns facilitating the interviews and taking notes.

• We recorded both audio and video of these conversations with Zoom.

• We also took notes in Box Notes in real time to capture what those with lived experience shared with us.

SYNTHESIZE

Experience Group Research Synthesis

Audio recordings from each Experience Group session were transcribed (and translated from Spanish, if applicable) and systematically analyzed using NVivo software. Multiple members of the study team reviewed and coded each transcript independently. Themes were then categorized into the Value Institute for Health and Care’s framework of Capability, Comfort and Calm.

This framework measures the quality of health care in a manner that is consistent with patients’ priorities and goals. Capability measures a patient’s functional ability in relation to the condition by which they are affected. Comfort measures relief from both physical and emotional pain caused by the condition. Calm measures the extent to which care disrupts a patient’s life by considering indicators such as how many hours per week a patient spends at appointments. The framework is further utilized to define gaps in care and unmet needs of patients and their families.

Design Research Synthesis 

Stories from our research needed to be distilled into a set of generative design principles and outcomes to be achieved. This is one of the more involved aspects of the design process, upon completion of which lies the success of subsequent phases. The Design Institute culled insights, found patterns, and created a narrative for what patients, families, providers and other stakeholders need, and then created Journey Maps that helped to define key opportunity areas. Details of the synthesis process are below:

Interview debriefs

• Initially we reviewed our provider interview transcripts in Box Notes as individuals or as interview teams and tagged the interviews in Box Notes prior to debriefing as a full design team in Miro.

• We adjusted this process for patient interview transcription by using Dovetail to tag our interview transcripts individually or as interview teams so that we could more effectively organize our data to support analysis and synthesis.

  
  

Analysis

• Initially we collaboratively analyzed our tagged transcripts as a full design team by creating Miro "frames" that surfaced key data points for each interview

• After creating individual interview "frames" we worked through the process of aggregating our findings within the context of seven developmental stages; Prenatal, Interstage, Infancy, Toddlerhood, Childhood, Adolescence, and Adulthood

• We adjusted this process for patient interviews by using the Highlights feature in Dovetail individually or as interview teams to collate, filter, and surface the most relevant data points within the context of five developmental stages: Prenatal, Interstage, Childhood (includes Infancy + Toddlerhood), Adolescence, Adulthood, which we then began to map in various formats in Miro to create a more visual and accessible representation of what we learned in aggregate about people's lifelong experiences living with SV CHD

Synthesis via Journey Maps (Experience Maps)

• Initially we used our aggregate frames from Miro, Box Notes, and PowerPoint to synthesize our learnings from provider interviews, but found this process was cumbersome at best.

• We adjusted this process for patient interviews to lighten the churn of the process through features available in Dovetail, like tagging, highlighting, and collating data into patterns via "Insights."

  • There were various unsuccessful attempts to do synthesis entirely in Dovetail.

• As a way to augment synthesis in Dovetail without reverting back to using a text document, we opted to utilize the Insights feature to collate learnings we could use to start populating our lifetime overview and stage specific Journey Maps.

  • Essentially these Journey Maps are the output of our adapted synthesis process.

• Map Making helps us synthesize what we learned and incorporate feedback from those with lived experience to make our process more participatory.

Feedback to afford co-creation [1]

• Workshop #1 allowed us to play back what we learned in our interviews with participants.

• We were able to present our work-in-progress Journey Maps in a way that served to establish a feedback loop for co-creation.

• By presenting our work-in-progress Journey Maps to attendees they were able to tell us what we correctly or incorrectly represented, while also making suggestions for design interventions or service opportunities.

• Prepping for Workshop 1:

  • Created a detailed Run of Show document

  • Created a Facilitator Guide document

  • Created a higher-level Workshop Agenda document

  • Created this Methods overview document

  • Created a Presentation Deck

  [1] Co-creation: the collaborative development of concepts, solutions, products and services together with designers, healthcare providers, patients and families as well as other stakeholders.

DESIGN

Workshop #1: Journey Map & Opportunities 

Based on the framework created in the previous phase, we will run for a workshop focused on designing solutions to meet uncovered user needs. This workshop has two goals: (1) collect participant feedback about the care journey — represented visually as a map — that we will have as a draft; and (2) Identify opportunities for design of services, products, support, communication, etc. 

 The session will consist of targeted exercises, brainstorming sessions and quick prototyping, if applicable. The main goal of this workshop will be to gain alignment and collectively prioritize opportunities or concepts to develop and refine further in the future prototyping phase.

Workshop #1: Journey Map & Opportunities  

Based on the Journey Maps drafted in the previous phase, we ran a workshop focused on refining the Journey Map and identifying opportunities to meet uncovered patient and family needs. This workshop had two goals: (1) collect participant feedback about the care journey — represented in the Journey Maps; and (2) collectively identify opportunities for design of services, products, support, communication, etc. 



Workshop #2: Ideation

Led by a Design Institute project team members, the second workshop focused on ideating solutions to challenges uncovered through observations and interviews. The online workshop included the core design team, SV CHD specialists, and patient + parent representatives. We started by sharing key research opportunity areas then participants developed recommendations for concepts to prototype.

We also shared the recommendations that were identified by the patients and their parents that matter most to them and began to develop solutions for achieving those outcomes. 

We ended the workshop with a collection of ideas captured in notes, sketches, and narratives ranked and prioritized that allowed us to revise opportunities and provide the input necessary to create a service design blueprint in the next Corage project phase of work. 

Workshop #3: Summary

A summary workshop, hosted by the Value Institute for Health and Care, brought together people with SV CHD, their families, cardiac care providers and other key stakeholders to obtain further feedback from participants as to how the re-design opportunities might be prioritized. The Experience Group sesssion findings were also presented and discussed in small groups to inform Opportunity prioritization.

FUTURE DESIGN AND PROTOTYPING

The ideas generated in the workshop will take a more concrete shape with the aim of creating a service blueprint for SV CHD care. Depending on the type of opportunities that are pursued, we will design a service guide with specifications for training, information for procurement of products and props, communication requirements, videos, etc. 

 Since a Journey Map [*] will result from the work, it is important to emphasize that a Journey Map for the family may be different than the roadmap for the clinical team.

[*] NOTE: We made the distinction between “Journey Map” and “roadmap” to avoid confusion. A Journey Map tells patients and clinicians what to expect at the various points of the journey and help them prepare for what is ahead; a roadmap shows a timeline of how we will deploy the various services we’ve designed. A roadmap is a tool more for implementation.