Sage Journals: Discover world-class research

Abstract

Background

When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools.

Methods

We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users.

Results

We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users’ interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects.

Conclusions

By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.

Keywords

decision making decision support techniques health services research humans patient-centered care patient education patient participation

Get full access to this article

View all access options for this article.

References

Barry

Edgman-Levitan

Shared decision making—the pinnacle of patient-centered care. N Engl J Med. 2012;366:780–1.

Mulley

Trimble

Elwyn

Stop the silent misdiagnosis: patients’ preferences matter. BMJ. 2012;345:e6572.

Stacey

Légaré

Lewis

, et al. Decision aids for people facing health treatment or screening decisions. 2017;12:CD001431.

Spatz

Krumholz

Moulton

BW.

Prime time for shared decision making. JAMA. 2017;317:1309–10.

Gould

Lewis

Designing for usability: key principles and what designers think. Commun ACM. 1985;28:300–11.

Abras

Maloney-Krichmar

Preece

User-centered design. Encyclopedia of Human-Computer Interaction. 2004;37:445–56.

Kelley

Littman

The Art of Innovation: Lessons in Creativity from IDEO, America’s Leading Design Firm. 1st ed. New York: Crown Business; 2001.

Norman

DA.

The Design of Everyday Things. New York: Basic Books; 2002.

Shneiderman

Plaisant

Designing the User Interface: Strategies for Effective Human-computer Interaction. 5th ed. Boston: Addison-Wesley; 2010.

10.

ISO DIS. 9241-210: 2010. Ergonomics of Human System Interaction—Part 210: Human-Centred Design for Interactive Systems. Geneva: International Standardization Organization (ISO); 2009.

11.

Searl

Borgi

Chemali

It is time to talk about people: a human-centered healthcare system. Health Res Policy Syst. 2010;8:35.

12.

Wolpin

Stewart

A deliberate and rigorous approach to development of patient-centered technologies. Semin Oncol Nurs. 2011;27:183–91.

13.

Elkin

PL.

Human factors engineering in HI: so what? Who cares? and What’s in it for you?

Healthc Inform Res. 2012;18:237–41.

14.

Gurses

Ozok

Pronovost

PJ.

Time to accelerate integration of human factors and ergonomics in patient safety. BMJ Qual Saf. 2012;21:347–51.

15.

Bauman

Ennett

Foshee

, et al. Influence of a family-directed program on adolescent cigarette and alcohol cessation. Prev Sci. 2000;1:227–37.

16.

McDaniel

Casper

Hutchison

, et al. Design and testing of an interactive smoking cessation intervention for inner-city women. Health Educ Res. 2005;20:379–84.

17.

Nordfeldt

Hanberger

Malm

, et al. Development of a PC-based diabetes simulator in collaboration with teenagers with type 1 diabetes. Diabetes Technol Ther. 2007;9:17–25.

18.

Fonda

Kedziora

Vigersky

, et al. Evolution of a web-based, prototype personal health application for diabetes self-management. J Biomed Inform. 2010;43:S17–21.

19.

Fico

Fioravanti

Arredondo

, et al. A user centered design approach for patient interfaces to a diabetes IT platform. Conf Proc IEEE Eng Med Biol Soc. 2011;2011:1169–72.

20.

Zickler

Halder

Kleih

, et al. Brain painting: usability testing according to the user-centered design in end users with severe motor paralysis. Artif Intell Med. 2013;59:99–110.

21.

Weightman

APH

Preston

Holt

, et al. Engaging children in healthcare technology design: developing rehabilitation technology for children with cerebral palsy. J Eng Des. 2010;21:579–600.

22.

Gould

Lewis

Designing for usability: key principles and what designers think. Commun ACM. 1985;28:300–11.

23.

Mao

J-Y

Vredenburg

Smith

, et al. The state of user-centered design practice. Commun ACM. 2005;48:105–9.

24.

Nielsen

The usability engineering life cycle. Computer. 1992;25:12–22.

25.

Coulter

Stilwell

Kryworuchko

, et al. A systematic development process for patient decision aids. BMC Med Inform Decis Mak. 2013;13(suppl 2):S2.

26.

Witteman

Dansokho

Colquhoun

, et al. User-centered design and the development of patient decision aids: protocol for a systematic review. Syst Rev. 2015;4:11.

27.

Stacey

Légaré

, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;CD001431.

28.

Moher

Shamseer

Clarke

, et al. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Syst Rev. 2015;4:1.

29.

Pluye

Gagnon

Griffiths

, et al. A scoring system for appraising mixed methods research, and concomitantly appraising qualitative, quantitative and mixed methods primary studies in mixed studies reviews. Int J Nurs Stud. 2009;46:529–46.

30.

R Development Core Team. R: A Language and Environment for Statistical Computing. Vienna: R Foundation for Statistical Computing; 2017. Available from: https://www.R-project.org/

31.

Dugas

Trottier

M-È

Chipenda Dansokho

, et al. Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study. BMC Med Inform Decis Mak. 2017;17:12.

32.

Coulter

Kryworuchko

Mullen

, et al. Chapter A: using a systematic development process. Update of the International Patient Decision Aids Standards (IPDAS) Collaboration’s Background Document. 2012;1–16.

33.

Coulter

Stilwell

Kryworuchko

, et al. A systematic development process for patient decision aids. BMC Med Inform Decis Mak. 2013;13:S2.

34.

Hoffman

Volk

Saarimaki

, et al. Delivering patient decision aids on the Internet: definitions, theories, current evidence, and emerging research areas. BMC Med Inform Decis Mak. 2013;13(suppl 2):S13.

35.

Snyder

Paper Prototyping: The Fast and Easy Way to Design and Refine User Interfaces. Burlington (MA): Morgan Kaufmann; 2003.

36.

Hanrahan

Yuan

Rosson

, et al. Materializing interactions with paper prototyping: a case study of designing social, collaborative systems with older adults. Design Studies. 2019;64:1–26.

37.

Boyd

Day

Wasserman

, et al. Paper prototyping comfortable VR play for diverse sensory needs. In: Extended Abstracts of the 2019 CHI Conference on Human Factors in Computing Systems. Paper LBW1714. New York: Association for Computing Machinery; 2019. pp 1–6.

38.

Hakim

Bettinger

Chambers

, et al. A web application about herd immunity using personalized avatars: development study. OSF Preprints. 2020. Available from: https://osf.io/5y8nr/

39.

Brett

Staniszewska

Mockford

, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17:637–50.

40.

Topic of Conversation . Den Haag (the Netherlands): Dutch Organization for Health and Innovation in Healthcare; 2010.

41.

Collier

Federal government unveils patient-oriented research strategy. Can Med Assoc J. 2011;183:E993–4.

42.

CRediT. CASRAI. Available from: http://docs.casrai.org/CRediT. Accessed June 23, 2017.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.10 MB

0.12 MB

0.67 MB

0.19 MB

1.52 MB

0.49 MB

0.14 MB

0.18 MB

User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review

Abstract

Background

Methods

Results

Conclusions

Keywords

Get full access to this article

References

Supplementary Material