. 2025 Apr 22;25(1):574.

doi: 10.1186/s12913-025-12705-w.

Co-design and prototype development of MedManageSCI: a medication self-management toolkit for adults with spinal cord injury/dysfunction

Lauren Cadel^{1

2}, Rasha El-Kotob¹, Sander L Hitzig^{3

4

5

6}, Lisa M McCarthy^{1

2

7

8

9}, Shoshana Hahn-Goldberg^{1

10}, Tanya L Packer^{11

12}, Tejal Patel^{7

13}, Stephanie R Cimino¹⁴, Aisha K Lofters^{6

8

9}, Chester H Ho¹⁵, Maliha Asif¹, Sara J T Guilcher^{16

17

18

19

20

21}

Affiliations

¹ Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada.
² Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada.
³ St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
⁴ Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁵ Department of Occupational Science and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁶ Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
⁷ School of Pharmacy, University of Waterloo, Kitchener, ON, Canada.
⁸ Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
⁹ Women's College Research Institute, Toronto, ON, Canada.
¹⁰ Openlab, University Health Network, Toronto, ON, Canada.
¹¹ Schools of Occupational Therapy and Health Administration, Dalhousie University, Halifax, NS, Canada.
¹² Department of Nursing, Umeå University, Umeå, Sweden.
¹³ Schlegel-University of Waterloo Research Institute of Aging, Waterloo, ON, Canada.
¹⁴ Lawson Research Institute, St. Joseph's Healthcare, London, ON, Canada.
¹⁵ Division of Physical Medicine & Rehabilitation, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
¹⁶ Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
¹⁷ Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada. sara.guilcher@utoronto.ca.
¹⁸ St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
¹⁹ Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
²⁰ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
²¹ Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.

PMID: 40259306
PMCID: PMC12013044
DOI: 10.1186/s12913-025-12705-w

Co-design and prototype development of MedManageSCI: a medication self-management toolkit for adults with spinal cord injury/dysfunction

Lauren Cadel et al. BMC Health Serv Res. 2025.

. 2025 Apr 22;25(1):574.

doi: 10.1186/s12913-025-12705-w.

Authors

Affiliations

¹ Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada.
² Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada.
³ St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, ON, Canada.
⁴ Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁵ Department of Occupational Science and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
⁶ Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
⁷ School of Pharmacy, University of Waterloo, Kitchener, ON, Canada.
⁸ Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada.
⁹ Women's College Research Institute, Toronto, ON, Canada.
¹⁰ Openlab, University Health Network, Toronto, ON, Canada.
¹¹ Schools of Occupational Therapy and Health Administration, Dalhousie University, Halifax, NS, Canada.
¹² Department of Nursing, Umeå University, Umeå, Sweden.
¹³ Schlegel-University of Waterloo Research Institute of Aging, Waterloo, ON, Canada.
¹⁴ Lawson Research Institute, St. Joseph's Healthcare, London, ON, Canada.
¹⁵ Division of Physical Medicine & Rehabilitation, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
¹⁶ Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
¹⁷ Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada. sara.guilcher@utoronto.ca.
¹⁸ St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
¹⁹ Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
²⁰ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.
²¹ Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada. sara.guilcher@utoronto.ca.

PMID: 40259306
PMCID: PMC12013044
DOI: 10.1186/s12913-025-12705-w

Abstract

Background: Medications are among the most common health interventions, with certain populations, such as individuals with spinal cord injury/dysfunction (SCI/D), commonly prescribed multiple medications. Consequently, adults with SCI/D often engage in activities related to medication self-management, but there are few comprehensive resources for this population. The objective of this study was to co-design the prototype of a toolkit to support medication self-management among adults with SCI/D.

Methods: We conducted a participatory multi-methods study, using the Good Things Foundation Pathfinder Model as a guide for the co-design process. Participants included adults with SCI/D, caregivers, and healthcare providers. Following the model's three stages, we: (1) understood and defined the problem by conducting a scoping review, concept mapping study, and working group sessions; (2) created a prototype of the toolkit through working group sessions and website development meetings; and (3) tested the prototype through working group sessions.

Results: The working group consisted of 19 individuals, including 9 adults with SCI/D, 1 caregiver, and 9 healthcare providers. In Stage 1, we identified the need for a comprehensive medication self-management resource through a scoping review, brainstormed content and delivery methods, and thematized and prioritized the content into eight categories through a concept mapping study. The concept mapping study included 44 participants, including 21 adults with SCI/D, 11 caregivers, and 12 healthcare providers. In Stage 2, feedback on the content mapped onto five categories: first impressions, message and purpose, visual elements, layout and flow, and graphics. The name, MedManageSCI, was selected by the working group. Through an iterative process with the website development company, an online version of the toolkit prototype was created ( www.medmanagesci.ca ). In Stage 3, participants provided recommendations to improve the website's functionality and navigation.

Conclusions: The co-design of the MedManageSCI prototype is a significant step toward addressing the medication self-management needs of adults with SCI/D. The implications of this work extend beyond SCI/D, highlighting the importance of tailored digital health resources for populations with complex healthcare needs. Future work is needed to refine the content, assess the feasibility, acceptability, and appropriateness of the toolkit, and examine outcomes related to medication self-management.

Keywords: Chronic condition; Co-design; Digital health intervention; Medication adherence; Medication self-management; Participatory research; Self-care; Self-management; Spinal cord dysfunction; Spinal cord injury; Toolkit; User-centered innovation.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: All participants provided written informed consent prior to participation. This study received ethics approval from the Research Ethics Boards of the University of Toronto (#42195) and the University of Alberta (#Pro00121103). All research was carried out in compliance with the Declaration of Helsinki. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests.

Figures

**Fig. 1**
Overview of co-design stages, activities, and timelines

**Fig. 2**
Original, revised, and final video scenes based on the working group sessions

**Fig. 3**
Original and final infographic based on the working group sessions

**Fig. 4**
Original, revised, and final video scenes based on the working group sessions

See this image and copyright information in PMC

References

1. World Health Organization. Medication safety in polypharmacy. Geneva: World Health Organization; 2019.
1. Statistics Canada. Prescription medication use among Canadian adults, 2016 to 2019 Canada: Statistics Canada. 2021. Available from: https://www150.statcan.gc.ca/n1/daily-quotidien/210628/dq210628e-eng.htm.
1. National Center for Health Statistics. Therapeutic Drug Use USA: CDC/National Center for Health Statistics. 2019. Available from: https://www.cdc.gov/nchs/fastats/drug-use-therapeutic.htm.
1. Cadel L, Cimino SR, Bradley-Ridout G, Hitzig SL, Packer TL, McCarthy LM, et al. A scoping review of medication self-management intervention tools to support persons with traumatic spinal cord injury. PLoS ONE. 2023;18(4):e0284199. 10.1371/journal.pone.0284199. - PMC - PubMed
1. Lorig KR, Holman HR. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7. 10.1207/S15324796ABM2601_01. - PubMed

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Co-design and prototype development of MedManageSCI: a medication self-management toolkit for adults with spinal cord injury/dysfunction

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Co-design and prototype development of MedManageSCI: a medication self-management toolkit for adults with spinal cord injury/dysfunction

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