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Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals’ self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant.
The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app.
To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study.
In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations.
This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.
Ever since communication technologies were adopted for health care purposes and defined under the umbrella term electronic health (eHealth), the concept of empowerment and the use of technological solutions have become intertwined [
Studies have examined not only the effectiveness of mHealth [
Another flaw of many existing apps lies in the quality of their content, which does not reflect the latest scientific evidence. Indeed, some ex-post examinations of mHealth apps underlined that their content rarely adheres to evidence-based knowledge [
Participatory design is a democratic process involving different stakeholders from the early phases of the design process [
The objective of this study was to fill this gap by describing a structured procedure for the participatory identification of evidence-based content to ground the development of a self-management app. To illustrate the procedure, we used a project based in Switzerland aiming to develop an app for the prevention and self-management of pressure injuries (PIs) in individuals with spinal cord injury (SCI).
SCI is a complex chronic condition affecting human functioning in all aspects [
There is general agreement on the fact that PIs might be often preventable in individuals with SCI [
We used a consensus method for the participatory identification of evidence-based content to ground the development of a self-management app for PIs in individuals with SCI. Indeed, to ensure that individuals with SCI have access to sources of information that are credible, of good quality, and up to date, the information provided in the app should be consistent with the latest available clinical recommendations, including those that are indeed the best available evidence for pressure ulcer prevention and remain the foundation of a prevention program [
The recommendations were identified through a three-stage research procedure developed following the main steps of the consensus development method [
Published recommendations on the prevention and management of PIs were identified through an electronic search and consultation with experts between March and July 2017. Keywords for the search were combined from three different domains. The first was related to PIs (ie, pressure ulcers, pressure injuries, decubitus, pressure sores, bedsores, and skin problems), the second was related to self-management (ie, prevention, detection, treatment, self-management, reduction, and risk factors), and the third was related to SCI (ie, spinal cord injury, tetraplegia, quadriplegia, and paraplegia). The online search applied these keywords in both English and German languages. The search was performed in Google as well as PubMed. The research team extracted all recommendations for the prevention and management of PIs that were directed toward or could be applied by community-dwelling individuals with SCI.
The review obtained a comprehensive collection of recommendations that were screened and synthesized (ie, similar recommendations from different sources were merged). The results of stage 1 were presented in a document that was sent to all participants of the consensus meeting for preparation.
A purposive sample of health professionals and community-dwelling individuals with SCI were invited to participate in a consensus meeting [
The final sample of 15 participants [
The consensus meeting was grounded in a systematic consensus planning process that helps to prioritize issues of a different kind during experts’ discussions [
Characteristics of participants in the consensus meeting.
Role | Workplace (for HPsa) | Working experience as a HP (years)/Years as a wheelchair user | Year of birth | Gender |
SCIb-specialized medical doctor | Swiss Paraplegic Centre | 15 | 1962 | M |
SCI-specialized medical doctor | Clinique de réadaptation romande | 14 | 1972 | M |
SCI-specialized nurse/wound expert | Swiss Paraplegic Centre | 18 | 1966 | F |
SCI-specialized nurse/wound expert | Clinique de réadaptation romande | 16 | 1974 | M |
SCI-specialized nurse/wound expert | Clinique de réadaptation romande | 2 | 1992 | F |
SCI-specialized nurse/wound expert | SCI-specialized counseling service | 14 | 1973 | F |
Occupational therapist | REHAB Basel | 16 | 1971 | F |
Physiotherapist | Swiss Paraplegic Centre | 18 | 1965 | F |
Nutritionist | Swiss Paraplegic Centre | 2 | 1991 | F |
Psychologist | Swiss Paraplegic Centre | 7 | 1964 | F |
Psychologist and person with SCI | Balgrist Klinik | 28/33 | 1957 | M |
Home care provider | Home care service | 8 | 1990 | F |
Home care counsellor | SCI-specialized counseling service | 3 | 1972 | F |
Representative from an accident insurance fund | Swiss Accident Insurance Fund (Suva) | 8 | 1967 | M |
Person with SCI | N/Ac | N/A/27 | 1970 | M |
aHP: health professional.
bSCI: spinal cord injury.
cN/A: not applicable.
The participants were divided into two working groups (whenever possible, a representative for every profession and a person with SCI were included in each working group). Moreover, professionals who worked together were included in different groups. They were asked to discuss one by one the recommendations derived from stage 1 and to vote by show of hands in favor of or against their inclusion in the set of recommendations to be implemented in the app. The vote should be based on the relevance and applicability of the recommendations for community-dwelling individuals with SCI. The facilitator of each group was in charge of taking notes on the discussions and carrying out the vote with the help of an ad-hoc technological infrastructure. A Microsoft Access (2010, version 14.0; Microsoft Corp, Redmond, Washington, USA) database containing the list of recommendations resulting from stage 1 was developed prior to the consensus meeting. Every participant voted in favor or against inclusion of each of the recommendations. The facilitator entered the sum of individual votes into the Access database. Based on this sum, a percentage of agreement for including each recommendation was computed. After this first vote (vote A), it was possible to merge the votes of the working groups and retrieve from the system the list of recommendations divided into recommendations to be included, recommendations to be excluded, and recommendations that were ambiguous
Moreover, during the group discussions, the participants had the opportunity to indicate that a recommendation needed specification. This was mostly the case when the recommendation was deemed to be too generic or when its applicability for community-dwelling individuals with SCI was considered unclear or vague. The recommendations that needed specification were collected in a list and further elaborated on in an afternoon session (part II).
The participants were divided into three working groups that were stratified by profession, workplace, and affiliation with the previous working groups. As for the morning working groups, whenever possible, we distributed the participants so that at least one representative of every profession and of people with SCI was present in each group. Moreover, professionals who worked together were included in different groups. We also differently mixed the participants with respect to the morning working groups.
Participants further specified the recommendations that were indicated during the previous session as being too vague or unclear to be implemented by community-dwelling individuals with SCI in their daily lives. Each of the three working groups received a list of 20 or 21 recommendations to specify (total 62) and was assigned a sheet of paper presenting a research-based user persona. User personas (
After the consensus meeting, the research team together with two experts from the project scientific advisory board consolidated the results by refining them and taking into consideration the input of the participants. For instance, special attention was devoted to the recommendations that remained ambiguous after stage 2. They were screened and sorted out by the research team based on eight logical rules for their inclusion or exclusion. The rules (
If the average of group 1 (G1) and group 2 (G2) in vote A is <40% and in vote B is >40% but <75%, exclude the recommendation.
If the average of G1 and G2 in vote A is <40% and in vote B is >75%, include the recommendation.
If the average of G1 and G2 in vote A is >75%, average of G1 and G2 in vote B is >40% but <75%, and decrement of vote A-vote B is ≥25%, exclude the recommendation.
If the average of G1 and G2 in vote A is >75%, average of G1 and G2 in vote B is >40% but <75%, and decrement of vote A-vote B is <25%, include the recommendation.
If the average of G1 and G2 in vote A is >75% and in vote B is >75%, include the recommendation.
If the average of G1 and G2 in vote A is >40% but <75% and in vote B is >75%, include the recommendation.
If the average of G1 and G2 in vote A is >40% but <75%, average of G1 and G2 in vote B is >40% but <75%, and increment of vote A-vote B is ≥25%, include the recommendation.
If the average of G1 and G2 in vote A is >40% but <75%, average of G1 and G2 in vote B is >40% but <75%, and increment of vote A-vote B is <25%, exclude the recommendation.
The sources presented in
The result of the review and recommendation categorization was a list of 130 recommendations for the prevention and management of PIs by individuals with SCI organized in relation to the following topics: (1) Support surface (code A); (2) Repositioning (code B); (3) Nutrition (code C); (4) Skin care (code D); (5) Skin assessment (code E); (6) Exercising (code F); (7) Collaboration with health professionals or caregivers (code G); (8) Transfers (code H); (9) Clothing (code I); (10) Body function and structure (code J); (11) Personal factors (code K); and (12) General (code L). The orders of the categories and recommendations within a category do not reflect a priority order. The recommendations were then collected in a preparatory document, which was sent to the participants prior to the consensus meeting.
Documents reviewed for the identification of recommendations.
Source | Document |
Deutschsprachige Medizinische Gesellschaft für Paraplegie (DMGP) (http://www.dmgp.de/) | Querschnittspezifische Dekubitusbehandlung und-prävention (2017) [ |
Ontario Neurotrauma Foundation (ONF) (http://www.onf.org) |
Canadian Best Practice Guidelines for the Prevention and Management of Pressure Ulcers in People with Spinal Cord Injury. A Resource Handbook for Clinicians (2013) [ |
European Pressure Ulcer Advisory Panel (http://www.ePIap.org/); National Pressure Ulcer Advisory Panel (http://www.nPIap.org/); and Pan Pacific Pressure Injury Alliance (EPIAP-NPIAP-PPPIA) (http://www.internationalguideline.com/) | Prevention and Treatment of Pressure Ulcers: Quick Reference Guide (2014) [ |
Spinal Cord Injury Research Evidence (SCIRE) (www.scireproject.com) | Pressure Ulcers Following Spinal Cord Injury (2014) [ |
International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/) | Textbook on Comprehensive Management of Spinal Cord Injuries, chapter 48 (2015) [ |
Schweizer Paraplegiker-Zentrum (SPZ) (http://www.paraplegie.ch) | Patientenaufklärung, Druckstellen-Dekubitus - V1.0 [ |
A total of 62 recommendations needed specification. The list was composed of recommendations indicated by the working groups as well as recommendations indicated
Results from vote A.
Results from vote B.
The research team examined the 21 recommendations that remained ambiguous after vote B. The ex-post examination resulted in the inclusion of seven recommendations in the final set and the exclusion of 14.
The review of existing recommendations (stage 1) resulted in three recommendations for the category of nutrition. These recommendations were debated considerably in the working groups during the consensus meeting (stage 2), as they were considered unsatisfactory. Although participants recognized the importance of nutrition as a risk factor for PIs, they criticized the incompleteness of the presented recommendations and their inability to depict the complexity of nutrition advice in relation to the prevention and management of PIs in individuals with SCI. Hence, the participants agreed with the research team to set up a working group composed of nutritionists and SCI-specialized medical doctors to develop new comprehensive nutrition recommendations.
Characteristics of the participants consulted for recommendations on nutrition.
Role | Working place | Years of working experience | Year of birth | Gender |
Nutritionista | Swiss Paraplegic Centre (Nottwil) | 2 | 1991 | F |
Nutritionist | Swiss Paraplegic Centre (Nottwil) | 6 | 1980 | F |
Nutritionist | Swiss Paraplegic Centre (Nottwil) | 13 | 1976 | F |
SCIb-specialized medical doctor | Swiss Paraplegic Centre (Nottwil) | 21 | 1966 | F |
aTook part also in the consensus meeting.
bSCI: spinal cord injury.
Multiple sessions of expert consultation were conducted with the aim of developing nutrition recommendations that account for the complex interaction between SCI management and PI prevention. These consultations took place between the end of 2017 and the middle of 2018. Based on previously examined and new sources [
The final set of recommendations is presented in
A checklist for the process of participatory selection of the evidence to ground a self-management app is presented in
Theoretical
Broadly consider the concept of self-management for the respective health condition
Adopt a holistic perspective for care (bio-psycho-social)
Methodological
Consult experts to identify the relevant sources for clinical guidelines
Identify and screen grey, scientific, and practice-oriented literature
Expand the search to different languages if possible
Synthetize the evidence (ie, merge and categorize it). The use of existing classifications might be of help.
Practical
Draft a concise document summarizing the available evidence to be delivered to the participants of step 2 for preparation
Theoretical
Use an interdisciplinary approach
Adopt a holistic perspective for care (bio-psycho-social)
Review models of consensus building and strategies of conflict resolution
Methodological
Identify relevant experts for participation in the consensus meeting
Balance the mix of experts in the consensus meeting (eg, in terms of position, years of working experience, age, and gender)
Provide the participants with user personas (fictional characters with concrete characteristics and behaviors that are intended to represent different user types)
Systematize the process of evidence selection to reach democratic decisions
Be attentive to potential gaps in current evidence pointed out by participants
Practical
Facilitate participants’ preparation for the meeting by delivering a concise document synthetizing the evidence and explaining the process
Train the moderator and facilitators of the working groups in advance (eg, to ensure that all participants express their opinion)
Provide support with a technological infrastructure to facilitate the voting and the calculation of the vote results
Allocate enough time for the different tasks and plenary discussions
Theoretical
Use an interdisciplinary approach
Adopt a holistic perspective to care (bio-psycho-social)
Methodological
Compare and contrast the results with existing recommendations to identify potential gaps or “blind spots”
If needed, organize ad-hoc expert consultations
Practical
Prepare a report explaining how results were reached
Elicit participant validation
This article proposes a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. To our knowledge, this is one of the first attempts to apply a structured procedure for the participatory identification of evidence-based content for a self-management app in the field of SCI. The procedure consists of the following three steps: review of the literature, consensus meeting, and consolidation of the results (including, for instance, a set of expert consultations, if needed).
Our methodological approach raises two challenges that can hinder the development of evidence-based mHealth interventions. First, it has to be noted that sometimes the literature itself presents contradictory evidence [
The second challenge is to select relevant and applicable evidence for people living in the community. In particular, this study stresses the challenge of selecting the evidence base for the prevention of a complication in the context of a complex chronic condition. Indeed, when selecting the prevention measures for PIs, experts have to take into consideration all aspects of self-management as well as feasibility issues. For instance, in the case of the prevention of PIs in individuals with SCI, it was mentioned during the working group that hydration is very important for preventing PIs; however, liquid intake often requires catheterization, which, in turn, can increase the risk of bladder infections. Similarly, doing pushup exercise to relieve the skin is good for preventing PIs, but it could cause damage to the shoulders in the long term. These examples illustrate the complexity and sometimes conflicting nature of evidence-based recommendations that are feasible for community-dwelling individuals and that ensure a comprehensive approach to the self-management of SCI. Indeed, systematic reviews and meta-analysis offer valuable synthesis of the evidence [
We have to acknowledge a few limitations of our study. The first one is related to the selection of recommendations, as we searched only for recommendations in English and German. We also focused on recommendations specific to SCI and PIs, not considering, for instance, other recommendations on SCI in general or on PIs in other populations. The second limitation is linked to the participants in the consensus meeting. All relevant stakeholders were represented; however, the participant mix could have been more balanced (eg, there were many nurses and only one occupational therapist). In addition, the consensus meeting was held on only one day. This resulted in focused discussions on many relevant aspects of the recommendations, but it was very intense for all participants. Having more time at our disposal could have also allowed an additional discussion and voting round to avoid concluding the meeting while still having some ambiguous recommendations, which the research team later needed to clarify. We also acknowledge that the procedure used has not been compared with another procedure and has not been evaluated. However, the commitment of the participants during the procedure showed that the participatory approach was positively received.
Although this study had the above-mentioned limitations, it is important to acknowledge some of its strengths. The methodological choice of holding a consensus meeting has been proven to be highly valuable, as its structured process guarantees a democratic discussion and a judicial model [
Considering that people need evidence-based information to make informed decisions and participate in health [
User personas.
Final set of recommendations for pressure injury prevention and management.
electronic health
mobile health
pressure injury
spinal cord injury
The authors would like to thank the Swiss Accident Insurance Fund (Suva) for funding the project this paper was based on. We are also very grateful to Nadia Lustenberger and the master’s students who supported us in the literature review, Melissa Selb and Wolfgang Segerer for their advice and invaluable support in the organization and conduction of the consensus meeting, and other colleagues who assisted as note takers and facilitators. We would also like to thank all the participants for their valuable insights and collaboration.
None declared.