Methods and operational aspects of human‐centred design into research processes for individuals with multiple chronic conditions: A survey study

Abstract

Aim

To examine ways in which human‐centred design was integrated into a nursing school's research processes involving individuals with multiple chronic conditions.

Design

Cross‐sectional survey study.

Methods

Three surveys were sent out, with surveys 1 and 2 involving faculty who had worked closely with design strategists and survey 3 as a school‐wide survey eliciting experience with human‐centred design, respectively.

Results

Survey respondents (n = 7 for surveys 1 and 2 and n = 36 for survey 3) had no or minimal experience with human‐centred design. Faculty respondents indicated it helped engaging various stakeholders, particularly in intervention development. Key lessons learned included: (1) the importance of designer involvement from study conception, (2) distinguishing a design strategist's skillset from strictly visual design, (3) challenges during the ethical review processes, and (4) sustainability of resources. The dynamic approach of human‐centred design has benefited our efforts to advance the science of caring for individuals with multiple chronic conditions.

1. INTRODUCTION

Growing health disparities (Treadwell et al., 2019), the aging population, and the increasing burden of multiple chronic conditions (Boersma et al., 2020, 2021) underscore the importance of dynamic and innovative approaches in research design, scientific leadership, implementation, evaluation, and dissemination. Multi‐level approaches are needed that consider the relationship between persons experiencing multiple chronic conditions, families, providers, and systems issues to develop interventions that foster resilience and improve health outcomes. Design thinking, a process for creative problem‐solving, may help redefine existing healthcare challenges and build human‐centred interventions (Norman et al., 2021).

Human‐centred design (HCD) is an inclusive and collaborative series of methods in which members of a community serve as experts in their own life challenges, while synthesizing information from them to refine the problem, brainstorm ideas and prototyping concepts, and test solutions (Ku & Lupton, 2020). This method may allow researchers to work collaboratively with individuals with multiple enduring illnesses to identify pre‐existing problems and develop long‐term solutions that address the needs of this population. The Johns Hopkins School of Nursing is a leading research‐focused institution with rich resources for studies with a traditional emphasis on quantitative methodologies and randomized controlled trials but lacked integration of HCD prior to 2019. Through a recent federally funded research centre for advancing the science of health with people living with multiple chronic conditions (P30 PROMOTE), the school partnered with the Maryland Institute College of Art and hired a part‐time design strategist to integrate HCD methods with centre‐funded pilot principal investigators (PIs) and the school's faculty. The subsequent demand for HCD support prompted additional designer hires. Our research question was: ‘How has HCD been incorporated into the school's research resources and what its impact has been like on the faculty's research?’ To answer this question, the centre faculty and staff decided to conduct an online survey, while reflecting on the methods and operational aspects of HCD integration into nursing research processes.

2. BACKGROUND

The goal of the HCD process is to engage those who are impacted by the design throughout the creation process—not just once the solution is finalized. Participatory research strategies are used at the start to immerse the human‐centred designer (design strategist) in the stakeholders' perspectives, experiences, and needs (Vaughn & Jacquez, 2020). Information learned is synthesized through tools such as personas (i.e., fictional characters created to represent possible types of end users of a product) (Dam & Siang, 2022a) or journey mapping (i.e., laying out the end user's experience with a product over time) (Atlassian, n.d.) to communicate the current problems to solve. The people involved in the study then brainstorm to develop a multitude of ideas. Collectively prioritized concepts are portrayed through basic forms called low‐fidelity prototypes (e.g., storyboards and sketches) to receive feedback from the stakeholders (Dam & Siang, 2022b).

The iterative nature of HCD has the potential to foresee implementation gaps that occur in designing new interventions and translating them into today's complex healthcare system. For example, in a systematic review, interventions created with HCD demonstrated high satisfaction, usability, and outcomes among persons experiencing psychological disorders or caregiver stress (Altman et al., 2018). Additionally, studies incorporating HCD in building digital technologies for individuals with multimorbidity (Bhattacharyya et al., 2019; Kumar et al., 2014; Lyles et al., 2016) and their caregivers (Steele Gray et al., 2016) resulted in modifications to the protocol to better fit the needs of the target population. These available findings suggest the utility of HCD to elevate voices that might not be otherwise heard, increase creativity, facilitate stakeholder buy‐in, and generate better solutions to complex problems. Indeed, HCD is increasingly used in healthcare research to uncover unmet health needs, increase patient trust, design better interventions, and improve hospital space, workflows, processes, and policies (Norman et al., 2021).

At the Johns Hopkins School of Nursing, we coupled HCD with the Medical Research Council Framework for Complex Interventions to enable contextual tailoring of interventions being developed by our pilot PIs and other faculty. The Medical Research Council Framework is a systematic process for intervention development (Craig et al., 2008, 2013; Moore et al., 2015), augmented by the National Academies of Sciences, Engineering, and Medicine's Framework for Educating Health Professionals to Address the Social Determinants of Health (National Academies of Sciences and Medicine, 2016). The framework emphasizes the need for more attention on understanding the ‘context’ in which an intervention brings about change or generates an outcome. According to the framework, the conditions to ‘realize its mechanisms of change’ should be carefully considered so that the intervention can maximize impact in real world implementation.

To help promote the adoption of HCD in intervention design, we provided HCD consultations first to five pilot PIs of the P30 PROMOTE Center. The design strategist worked with faculty to determine which HCD tools fit best in a research project's given context (see Table 1 for details of our efforts to integrate HCD resources into research design with relevant impact). Gradually, additional design strategists were hired to build capacity to support more faculty and doctoral students. The design strategists also offered workshops to expose a greater number of faculty, research staff, and students on how to implement design thinking principles in their research. All design strategists were masters prepared and had diverse professional backgrounds (e.g., social design, graphic design, management consulting, product management and product design). After one and a half years of providing HCD resources, the centre faculty and staff conducted a systematic investigation to understand ways in which HCD was used and impacted our school's research processes.

TABLE 1.

Examples of key HCD approach and impact in faculty research projects

Project topic	Key approach	Impact
Adapting a home‐based behavioural intervention to apply it to older adults with cognitive impairment	Photovoice	First‐hand lived experiences shared through photos and notes taken inside the homes of end users (i.e., families of older adults living with cognitive impairment)
Developing a new intervention focusing on deprescription	Visual interview guides	Sharing of end user perspectives on a complex topic (polypharmacy management challenges) facilitated by using simplified visual cues
Developing a strengths‐based intervention to improve outcomes of caregivers of persons with advanced heart failure	Journey mapping, co‐creative sessions, storytelling	Caregivers engaged throughout the intervention design process, caregiver‐researcher connection improved, and person‐centeredness of the intervention components and materials
Developing an intervention in primary care settings to improve communication for primary care patients aged 65 years and over	Personas	Design of personas improved the study team's ability to empathize with diverse key stakeholders to support intervention sustainability and evaluation
Reimagining spaces for women living in Baltimore: Leaning into solutions to interpersonal trauma and violence	Stakeholder mapping	Enhanced role of Youth Advisory Board by increasing participation and continuous engagement
Developing an intervention to promote multi‐morbid symptom management across the illness trajectory	Journey mapping, storytelling, brainstorming	Intervention co‐design events facilitated and active end‐user participation achieved

3. THE STUDY

3.1. Aim

The aim of this study is to examine the ways in which HCD has been incorporated into the school's research involving individuals with multiple chronic conditions and the impact of HCD integration and lessons learned.

3.2. Design

We conducted a cross‐sectional survey study from February to April 2021.

3.3. Participants and data collection

We sent out three online surveys using Qualtrics, a web‐based survey tool. These surveys were co‐developed by the centre PI and a team of design strategists who helped integrate HCD methods into the projects of our pilot PIs and other school faculty and doctoral students. Although they were not pilot tested before the survey was sent out, additional centre faculty reviewed and suggested comments for improvement, which were incorporated. Surveys 1 and 2 involved the pilot PIs who had worked individually with design strategists. Questions in the two surveys were identical and asked questions about the impact and ease of use of HCD with design strategists. These surveys were sent out twice to ensure we capture those who had not filled out the initial survey 1 that was sent out. Free text prompts of surveys 1 and 2 involved clarifying questions for provided responses such as, ‘if greater than five, how has your project benefited from including design thinking,’ ‘if five or less, how could it have been more useful? Why do you feel like it was less than optimally useful?’ and ‘what have you learned from your experience working with the social designer that you'll use beyond this project (if any)?’ Survey 3 was a school‐wide survey for all faculty, staff, and doctoral students to assess the level of awareness and impact of HCD on the overall school's research culture and processes. The survey was sent out to 324 potential participants including faculty, staff, and doctoral students. Questions in the third survey asked about: (1) attendance at HCD training events, (2) whether and what HCD approaches had been applied to attendee's current work, and (3) what they would like to learn more about. All surveys were collected anonymously and did not contain demographic data beyond employment status (i.e., faculty, student, or staff). IRB approval for exempt review was obtained before current study initiation.

3.4. Data analysis

We used descriptive statistics such as counts and proportions to summarize responses from surveys 1 and 2. Given the identical questions asked for faculty surveys 1 and 2, responses from these surveys were pooled. Text‐based responses to the open‐ended questions in surveys 1 and 2 were analysed using content analysis (Vaismoradi et al., 2013). Survey 3 did not include any open‐ended questions. Hence, we used descriptive statistics only.

4. RESULTS

4.1. Investigators' experiences with individual HCD consultations

We received four responses to survey 1 and three responses to survey 2 (35% response rate). Combined results from survey 1 and 2 in quantitative form are depicted in Table 2. Pooled responses indicated that all PIs had no or minimal experience with HCD until the resource was provided. Faculty respondents noted that the design strategists were integrated either from the beginning of the project (57%) or midway (43%). When asked about the experience of including HCD in the faculty's own research, all (100%) rated 7 or above on a 1–10 scale, with higher ratings indicating more positive responses.

TABLE 2.

Combined quantitative results of survey 1 and 2 (n = 7)

Question	Option	n (%)
Were you familiar with human‐centred/social design prior to working with the design strategist?	Not at all	3 (42.9)
	Somewhat	4 (57.1)
Why did you choose to work with a design strategist? (Check all that apply)	It was required for funding	2 (28.6)
	Thought it had potential and would strengthen my project	4 (57.1)
	It would help me gain different perspectives in the project	5 (71.4)
	I was asked to join in the development by my supervisor	1 (14.3)
In what phases of your project did you engage with the design strategist?	From the beginning	4 (57.1)
	Midway through when some decision points were still left	3 (42.9)
On a scale of 1–10, how has your experience been working with the design strategist?	7	2 (28.6)
	8	2 (28.6)
	9	3 (42.9)
In working with the design strategist do you feel like (Check all that apply)	You have a better understanding of HCD/Social justice design frameworks	6 (85.7)
	You were able to apply HCD concepts to your project	5 (71.4)
	You will be able to apply HCD concepts to your research moving forward	5 (71.4)
	Your project benefited from the HCD tools, methods, and feedback	5 (71.4)
	The project results or outcomes were not impacted by the design strategist's contributions	1 (14.3)
If given the resource, would you continue to work with the design strategist?	Yes	7 (100)

The free text comments indicated that HCD approaches (e.g., storytelling, journey map or use of personas) aided in ways to engage various stakeholders in developing interventions. There were no comments reporting either a negative or unhelpful experience reported by the participants. A few text responses explained how HCD informed participant and/or stakeholder engagement for intervention design. One comment stated:

[HCD] generated strong and balanced engagement from our combined patient, research, and clinician advisory members.

Similarly, another comment noted,

My program is a tailored home‐based exercise intervention. HCD helps include the participants' input into the study design and intervention development.

To this end, one faculty described how she would integrate HCD approaches to inform her project:

We are planning to use various human‐centered design thinking in my projects such as storytelling approach and journey mapping [to understand symptom burden and trajectory from the perspectives of clinicians, patients, and caregivers to create a symptom management toolkit]. The storytelling approach seems really valuable. Additionally, since I am planning to understand disease trajectory, I see the value of using a journey map.

While working with a design strategist, most PIs in surveys 1 and 2 achieved a better understanding of HCD and said HCD provided a framework for thinking through personas, iteration, and thinking beyond initial ideas. All PIs (100%) indicated their preference for continuing work with design strategists for creativity and improving interventions, if they were provided as a resource:

As a nurse, we need different perspectives on the design and intervention development to help us think outside the box.

Additionally, when asked to share any lessons learned while working with a design strategist that the PIs would consider for future studies, they mentioned incorporating HCD early in the research process; this way, research teams would be able to integrate end user (i.e., research participant) preferences and perspectives that may possibly increase uptake of an intervention and the research process itself:

…I am planning to implement it [HCD] as early as possible. …The various design approaches I learned and the focus on valuing end‐users' preferences and perspectives in developing projects seems an enticing factor for me…Understanding and designing projects based on our patients and their families' wishes is the best learning and focus I want to use beyond this project.

Finally, some PIs found adding HCD to research projects as an exciting opportunity that may improve research endeavours in the school community, particularly for doctoral students:

I think PhD students would GREATLY benefit from working with a designer… it would really help ground them in WHY they are doing the research and help them brainstorm and process their ideas!

4.2. Awareness and impact of HCD on school's research culture and processes

Survey 3 was answered by 36 individuals (14 faculty and 22 staff members). There were no responses from doctoral students (see Table 3). Half of respondents (50%) were aware of HCD resources or events offered in the school, 33% were unaware and 17% were unsure. Attendance at ongoing, regular faculty development meetings at the school where HCD was discussed was most common (50%), followed by events such as an HCD presentation or workshop (31%) and 1:1 consultation (19%). Through these activities, participants reported learning the basics of HCD (25%), brainstorming techniques (19%), participatory research strategies (e.g., interviewing techniques, photo/video voice and card sorting) (19%), data synthesis and problem definition (e.g., persona and journey map) (14%), testing or data visualization techniques (6% and 8%, respectively), and other (e.g., prototyping methods or implementing HCD techniques in a research protocol or grant writing) (6%). When asked about future interest in applying HCD to research, 49% of participants expressed definitive interest and wanted to learn about the basics of HCD, data visualization techniques, and incorporating HCD techniques in research protocol or grant writing (42% each), followed by participatory research strategies or testing techniques (39% each), data synthesis and problem definition (36%), prototyping methods (31%), and brainstorming techniques (25%).

TABLE 3.

Quantitative results of survey 3 (n = 36)

Question	Option	n (%)
Your position	PhD student	0 (0)
	Faculty	14 (38.9)
	Staff	22 (61.1)
Have you heard of workshops or resources in the school related to human‐centred design before opening this survey?	Yes	18 (50.0)
	Not sure	6 (16.7)
	No	12 (33.3)
Have you attended any of the following programming that contained human‐centred design content? (select all that apply)	Regular faculty development meetings (e.g., Intervention Working Group, Research Center faculty meeting)	18 (50.0)
	Special event (e.g., HCD presentation or workshop)	11 (30.6)
	1:1 HCD consultation	7 (19.4)
	I think so, but I'm not sure if it was considered a ‘human‐centred design’ activity or not	4 (11.1)
	No	10 (27.8)
What did you learn from the event(s)/activities? (select all that apply)	Basics of human‐centred design	9 (25.0)
	Participatory research strategies (interviewing techniques, photo/video voice, card sorting)	7 (19.4)
	Brainstorming techniques	7 (19.4)
	Data synthesis and problem definition (persona, journey map, ‘How might We’ statements)	5 (13.9)
	Prototyping methods	2 (5.6)
	Testing techniques	2 (5.6)
	Getting ‘visual’ (use of MURAL or other tool for shared visual collaboration, mind mapping)	3 (8.3)
	Implementation of techniques in research protocol or grant writing	2 (5.6)
	Other	1 (2.8)
Do you want to learn more about human‐centred design and how to apply it to research?	Yes	16 (48.5)
	Maybe	13 (39.4)
	No	4 (12.1)
What would you like to learn more about? (select all that apply)	Basics of human‐centred design	15 (41.7)
	Participatory research strategies (interviewing techniques, photo/video voice, card sorting)	14 (38.9)
	Data synthesis and problem definition (persona, journey map, ‘How might We’ statements)	13 (36.1)
	Brainstorming techniques	9 (25.0)
	Prototyping methods	11 (30.6)
	Testing techniques	14 (38.9)
	Getting ‘visual’ (use of MURAL or other tool for shared visual collaboration, mind mapping)	15 (41.7)
	Implementation of techniques in research protocol or grant writing	15 (41.7)
How could we better support you in learning about or integrated human‐centred design into your research or practices? (select all that apply)	Workshops aligned with my current research phase or related to a certain tool/technique	18 (50.0)
	1:1 consultation with social designer	13 (36.1)
	Dedicated project resource	14 (38.9)

5. DISCUSSION

From the surveys, we found that HCD was well received by the school's faculty and staff. However, it is important to note that the reach of HCD did not extend to the majority of faculty. Those who used the resource endorsed HCD positively, noting benefits of integrating creative approaches into study design and intervention development while making research relevant for participants. Our surveys also revealed that using HCD processes in early‐stage research was considered particularly useful to investigators. There are several main lessons learned on incorporating HCD into the school's research resources.

Our process of introducing HCD to the school of nursing involved rotating a 1‐year fellow program with the Maryland Institute College of Art. This structure necessitated having a new design strategist each year. While a strategic way to experiment with a role new to academia, the impact was constrained by orientation time for both the HCD fellow and the PIs. From this experience, we learned that the impact of HCD can be limited when it is brought in the middle of a project. Though survey responses from PIs were that HCD was useful in their research, half of them had incorporated HCD methods midway through. This may have minimized the impact HCD had on the study design and outcomes. Studies benefit the most from HCD when it is integrated in the planning phase where the designers are allowed to understand and explore ways to add value to the study (Blynn et al., 2021). Bringing in a design strategist in the middle of the project limited integration of HCD because the PI had already developed solutions for the problem; this restricted the iterative process that should occur with the designers from early stages of the study (Blynn et al., 2021). Furthermore, the iterative process of HCD with end users in mind has the potential to translate research into practice and impact outcomes. The consideration of end users from the beginning ensures not only that HCD is fully integrated into the research project, but also that the intervention is desirable and directly applicable to those in the actual setting.

A second lesson we learned was to distinguish between HCD and visual design methods. Articulating the distinct skillset of a design strategist to the research team at the outset of an engagement is crucial so that these roles are not confused. While a design strategist might have visual design abilities, the primary goal of the design strategist is not to beautify materials or develop logos, but to create and implement a human‐centred research plan including participatory activities, data synthesis, workshop facilitation, and prototype development. In our experience, design strategists were often asked to focus on visual work, limiting the impact of their expertise. It is important for the design strategist to effectively communicate the value they bring, how much visual design they are willing to contribute, and for researchers to use their talents accordingly. The design strategist's skills may also have broader implications in not only improving health care, but educational outcomes. Their skill sets may be applied to design of heath service delivery, healthcare products, nursing curriculum, or education materials.

Additionally, the nature of HCD processes limited moving the work forward through the Institutional Review Board (IRB). Historically, the IRB protocol is set and changes to the protocol require additional approval (Orimadegun, 2020). However, incorporating HCD involves an ever‐changing process that incorporates feedback from various stakeholders (Beyer & Holtzblatt, 1998; Norman & Draper, 1986). Such iterative processes made the IRB process more complicated and sometimes required multiple phases and changes in research. To address these challenges, we are in the process of compiling IRB language and templates which we will share with our faculty and doctoral students as best practice materials moving forward.

Sustainability is a challenge. To keep design strategists beyond the end of the Center grant, investigators have incorporated HCD designers into some grant budgets. Additionally, upon a series of successful collaborations between design strategists and faculty, we recruited 2 full time design strategists whose salary was funded by new grants. This change allowed us as a school to propose more innovative methods to a subsequently funded grant. Additionally, one of the designers finished the fellowship and was hired as a full‐time employee working for three research projects at the School of Nursing and School of Public Health. Through these types of collaborations, the School of Nursing's investment in HCD impacted other schools as well.

As our experience in building HCD capacity demonstrates, there are different ways of acquiring HCD knowledge and application expertise, which vary in levels of upfront financial support. We developed a table outlining some of the possibilities based on resource intensity (Table 4), ranging from an isolated project engagement to full time design strategist team members. Each option offers benefits and limitations. Those that are limited in scope require less financial sustainability. While likely to build general awareness of HCD principles, the impact of one‐time engagements or specialized workshops is more limited compared to higher financial investments like hiring part‐ or full‐time team members. The table offers our HCD implementation journey, employed over a 4‐year period, through which we tested and iterated, much like the HCD process itself. However, it is still important to note the school's effort to introduce and increase awareness of HCD methods to faculty, staff, and students. This was illustrated through the survey findings. Such efforts allowed exposure to HCD methods to the research culture in the school and made HCD resources available if the recipients deemed it useful and relevant for their research.

TABLE 4.

Methods of HCD integration and anticipated resource intensity

	Resource commitment	Partnerships/funding required	Impact	Limitations
Isolated project	Minimal	Partner with related higher education program	Introduction to HCD process and techniques for project team	Scheduling issues; more focus on process and ideas, and less likely to reach implementation
Specialized workshops	Minimal to moderate	Partner with higher education program, or independent contractor	Exposure of HCD among higher number of faculty, staff, and students	Application of workshop materials without support
Hiring part‐ or full‐time resource as consultant to PIs	Moderate to large	Funding through project grants	Increased bandwidth for individual consultations, and dedicated project work time	Grant‐dependent, buy‐in of PIs, misalignment of position cycle with project cycle
Full time resource as team member	Large	Recruitment of talent with design thinking and project management skillsets	Integration of HCD into project team	Budget

6. LIMITATIONS

There are a number of limitations we would like to acknowledge. First, we were unable to measure the impact of HCD beyond our faculty PIs' qualitative, anecdotal descriptions. Future research may include a case study of the working process between a researcher and a design strategist using HCD methods to better illustrate the mechanisms and direct applications of HCD methods in research design. At this point, it is unclear if HCD can lead to better intervention design or better patient outcomes. Additionally, due to limited resources, HCD was made available to a small group of PIs whose research goals were aligned with the mission of the P30 centre (i.e., developing interventions for adults living with multiple chronic conditions). Future investigation is warranted to identify benefits and challenges of HCD in the design of research focusing on other topics. Additionally, depending on the style of the PI, the research team and budget, the extent of the design strategists' involvement in research projects varied. Sometimes the designer acted as part of the research team designing and conducting activities, whereas other times the designer served as a consultant/advisor providing guidance. Third, the surveys had a low response rate of only 35%. Those who answered might not have been representative of those who did not and may have been more positive about HCD. Finally, our school of nursing faculty were willing to try HCD for their research. Given the diversity in the mission and goals of a wide variety of academic institutions, which may or may not include research, our findings may not be generalizable.

7. CONCLUSION

Adapting research methodologies to be more inclusive of end users and target communities is critically important. In particular, increasing community involvement in research projects is important to address a power imbalance between the researcher and the participant (Skewes et al., 2020). The dynamic approach of HCD has benefited our school's efforts to advance science in caring for individuals with multiple chronic conditions and their families. Despite the uneven incorporation of HCD across faculty, based on the experience of several faculty incorporating HCD into future grants, the school has now hired full‐time design strategists and will make HCD consultation service part of its research infrastructure—similar to statistical support—while expanding the target audience to more intentionally include doctoral students. In doing so, we hope to promote research that builds on individual or community needs while co‐creating the research process with them. Our lessons learned may provide insights and ways for others to incorporate HCD into their research endeavours.

AUTHOR CONTRIBUTIONS

All authors approved the final version of the manuscript. SLS originated the study. HRH led the writing. HRH, JWL, MAS, JMP, EH, VA, AJ, QL, MW, PMD and SLS contributed to the acquisition, analysis, or interpretation of data. HRH and JWL drafted the manuscript, and all authors contributed to the critical revision of the manuscript.

FUNDING INFORMATION

National Institute of Nursing Research (P30NR018093).

CONFLICT OF INTEREST

All authors have no conflicts of interest to declare.

ETHICS STATEMENT

Johns Hopkins Medicine IRB approval for exempt review was obtained before study initiation.

PATIENT CONSENT

Informed consent was waived for this study.

Han, H.‐R. , Lee, J. W. , Saylor, M. A. , Parisi, J. M. , Hornstein, E. , Agarwalla, V. , Jajodia, A. , Li, Q. , Weikert, M. , Davidson, P. M. , & Szanton, S. L. (2023). Methods and operational aspects of human‐centred design into research processes for individuals with multiple chronic conditions: A survey study. Nursing Open, 10, 3075–3083. 10.1002/nop2.1554

DATA AVAILABILITY STATEMENT

De‐identified data will be made available from the corresponding author upon reasonable request.