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Journal Description

The Journal's mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine. It aims to advance both science and practice, focusing on six content areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It explores how participation affects outcomes, resources, and relationships in healthcare; which interventions increase participation; and the types of evidence that provide the most reliable answers.

JoPM was self-published between 2009-2017 by the Society of Participatory Medicine, publishing over 200 peer-reviewed articles (Archive of pre-2017 articles). Since 2017, the journal is now proudly published by JMIR Publications, with the Society retaining editorial control (see joint SPM/JMIR Press Release).

All articles submitted after August 2017 are carefully copyedited and typeset, and XML-tagged for submission in PubMed Central and PubMed.

There are no publishing charges for unfunded research. There is a modest Article Processing Fee ($1500) in case of acceptance for grant-funded research or where authors have access to an institutional open access funds, e.g. COMPACT/COPE signatories. 

 

Recent Articles:

  • Source: Flickr; Copyright: N i c o l a; URL: https://www.flickr.com/photos/15216811@N06/14528468293/; License: Creative Commons Attribution (CC-BY).

    Your Patient Has a New Health App? Start With Its Data Source

    Abstract:

    Recent regulatory and technological advances have enabled a new era of health apps that are controlled by patients and contain valuable health information. These health apps will be numerous and use novel interfaces that appeal to patients but will likely be unfamiliar to practitioners. We posit that understanding the origin of the health data is the most meaningful and versatile way for physicians to understand and effectively use these apps in patient care. This will allow providers to better support patients and encourage patient engagement in their own care.

  • Source: Pexels; Copyright: Dương Nhân; URL: https://www.pexels.com/photo/photo-of-a-person-leaning-on-wooden-window-1510149/; License: Licensed by JMIR.

    Patient Perspective of Cognitive Symptoms in Major Depressive Disorder: Retrospective Database and Prospective Survey Analyses

    Abstract:

    Background: Major depressive disorder (MDD) is a common and burdensome condition. The clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective. Objective: This two-part study aimed to generate data from PatientsLikeMe, an online patient network, on the perception of cognitive symptoms and their prioritization in MDD. Methods: A retrospective data analysis (study 1) was used to analyze data from the PatientsLikeMe community with self-reported MDD. Information on patient demographics, comorbidities, self-rated severity of MDD, treatment effectiveness, and specific symptoms of MDD was analyzed. A prospective electronic survey (study 2) was emailed to longstanding and recently active members of the PatientsLikeMe MDD community. Study 1 analysis informed the objectives of the study 2 survey, which were to determine symptom perception and prioritization, cognitive symptoms of MDD, residual symptoms, and medication effectiveness. Results: In study 1 (N=17,166), cognitive symptoms were frequently reported, including “severe” difficulty in concentrating (28%). Difficulty in concentrating was reported even among patients with no/mild depression (80%) and those who considered their treatment successful (17%). In study 2 (N=2525), 23% (118/508) of patients cited cognitive symptoms as a treatment priority. Cognitive symptoms correlated with depression severity, including difficulty in making decisions, concentrating, and thinking clearly (rs=0.32, 0.36, and 0.34, respectively). Cognitive symptoms interfered with meaningful relationships and daily life tasks and had a profound impact on patients’ ability to work and recover from depression. Conclusions: Patients acknowledge that cognitive dysfunction in MDD limits their ability to recover fully and return to a normal level of social and occupational functioning. Further clinical understanding and characterization of MDD for symptom prioritization and relapse risk due to residual cognitive impairment are required to help patients return to normal cognitive function and aid their overall recovery.

  • Patient and family advisory group. Source: Image created by Authors; Copyright: The Authors; URL: https://jopm.jmir.org/2019/1/e12105; License: Creative Commons Attribution (CC-BY).

    Meaningful Partnerships: Stages of Development of a Patient and Family Advisory Council at a Family Medicine Residency Clinic

    Abstract:

    Background: Partnering with patients and families is a crucial step in optimizing health. A patient and family advisory council (PFAC) is a group of patients and family members working together collaboratively with providers and staff to improve health care. Objective: This study aimed to describe the creation of a PFAC within a family medicine residency clinic. To understand the successful development of a PFAC, challenges, potential barriers, and positive outcomes of a meaningful partnership will be reported. Methods: The stages of PFAC development include leadership team formation and initial training, PFAC member recruitment, and meeting launch. Following a description of each stage, outcomes are outlined and lessons learned are discussed. PFAC members completed an open-ended survey and participated in a focus group interview at the completion of the first year. Interviewees provided feedback regarding (1) favorite aspects or experiences, (2) PFAC impact on a family medicine clinic, and (3) future projects to improve care. Common themes will be presented. Results: The composition of the PFAC consisted of 18 advisors, including 8 patient and family advisors, 4 staff advisors, 4 resident physician advisors, and 2 faculty physician advisors. The average meeting attendance was 12 members over 11 meetings in the span of the first year. A total of 13 out of 13 (100%) surveyed participants were satisfied with their experience serving on the PFAC. Conclusions: PFACs provide a platform for patient engagement and an opportunity to drive home key concepts around collaboration within a residency training program. A framework for the creation of a PFAC, along with lessons learned, can be utilized to advise other residency programs in developing and evaluating meaningful PFACs.

  • Source: Flickr; Copyright: Katikati College; URL: https://www.flickr.com/photos/katikaticollege/5239447707/in/photostream/; License: Creative Commons Attribution (CC-BY).

    Application of Community-Engaged Research to Inform the Development and Implementation of a Peer-Delivered Mobile Health Intervention for Adults With Serious...

    Abstract:

    Background: Involving certified peer specialists in all phases of intervention development and research is a high priority to advance peer-delivered services. Certified peer specialists are individuals with a lived experience of a mental illness, and they are trained and accredited to provide Medicaid reimbursable mental health services. Community-engaged research can facilitate the development and implementation of peer-delivered interventions; however, little is known about the processes. We present our application of community-engaged research to inform the development and implementation of a peer-delivered mobile health (mHealth) intervention for adults with serious mental illness. Objective: The aim of this study was to present a framework that can be used as a guide for researchers and certified peer specialists to develop and implement peer-delivered mHealth interventions in community settings. Methods: Informed by principles of community-engaged research, we developed the Academic Researchers-Certified Peer Specialists mHealth Research Continuum. Principles of community-engaged research included in the Continuum include the following: (1) develop a clear understanding of the purpose, goal, and population involved in community change; (2) become knowledgeable about all aspects of the community; (3) interact and establish relationships with the community; (4) encourage community self-determination; (5) partner with the community; (6) respect community diversity and culture; (7) activate community assets and develop capacity; (8) maintain flexibility; and (9) commit to long-term collaboration. Results: Overall, 4 certified peer specialists participated in all phases of intervention development and research. Individuals who participated in the Academic Researchers-Certified Peer Specialists’ mHealth Research Continuum collaborated on 5 studies advancing peers’ roles in services delivery using mHealth and secured grant funding from a foundation to sustain their study. The Academic Researchers-Certified Peer Specialists’ mHealth Research Continuum has created a rare environment of inclusion by combining scientific expertise and certified peer specialists’ expertise to achieve a shared vision. Conclusions: This study delineates a process by which academic researchers and certified peer specialists participated in community-engaged research to develop and implement peer-delivered mHealth interventions in community settings.

  • ehealth, technology, and health. Source: iStock by Getty Images; Copyright: portishead1; URL: https://www.istockphoto.com/au/photo/social-media-concept-gm501290358-81257407; License: Licensed by the authors.

    Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review

    Abstract:

    Background: When health service providers (HSP) plan to develop electronic health (eHealth) resources for health service users (HSU), the latter’s involvement is essential. Typically, however, HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the eHealth context. Furthermore, it can be difficult to identify an established method to use, or determine how to work stepwise through any particular process. Objective: We sought to summarize the evidence about participatory methods and frameworks used to engage HSU in the development of eHealth resources from the beginning of the design process. Methods: We searched for studies reporting participatory processes in initial development of eHealth resources from 2006 to 2016 in 9 bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycINFO, Emcare, Cochrane Library, Web of Science, ACM Guide to Computing Literature, and IEEE Xplore. From 15,117 records initially screened on title and abstract for relevance to eHealth and early participatory design, 603 studies were assessed for eligibility on full text. The remaining 90 studies were rated by 2 reviewers using the Mixed Methods Appraisal Tool Version 2011 (Pluye et al; MMAT) and analyzed with respect to health area, purpose, technology type, and country of study. The 30 studies scoring 90% or higher on MMAT were included in a detailed qualitative synthesis. Results: Of the 90 MMAT-rated studies, the highest reported (1) health areas were cancer and mental disorders, (2) eHealth technologies were websites and mobile apps, (3) targeted populations were youth and women, and (4) countries of study were the United States, the United Kingdom, and the Netherlands. Of the top 30 studies the highest reported participatory frameworks were User-Centered Design, Participatory Action Research Framework, and the Center for eHealth Research and Disease Management (CeHRes) Roadmap, and the highest reported model underpinning development and engagement was Social Cognitive Theory. Of the 30 studies, 4 reported on all the 5 stages of the CeHRes Roadmap. Conclusions: The top 30 studies yielded 24 participatory frameworks. Many studies referred to using participatory design methods without reference to a framework. The application of a structured framework such as the CeHRes Roadmap and a model such as Social Cognitive Theory creates a foundation for a well-designed eHealth initiative that ensures clarity and enables replication across participatory design projects. The framework and model need to be clearly articulated and address issues that include resource availability, responsiveness to change, and the criteria for good practice. This review creates an information resource for future eHealth developers, to guide the design of their eHealth resource with a framework that can support further evaluation and development. Trial Registration: PROSPERO CRD42017053838; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=53838

  • Video consultation with doctor (montage). Source: Flickr / Placeit; Copyright: JMIR Publications; URL: https://jopm.jmir.org/2018/4/e11089/; License: Creative Commons Attribution (CC-BY).

    Use of Video Consultations for Patients With Hematological Diseases From a Patient Perspective: Qualitative Study

    Abstract:

    Background: The need for the use of telemedicine is expected to increase in the coming years. There is, furthermore, a lack of evidence about the use of video consultations for hematological patients, and how the use of video consultations is experienced from the patients’ perspective. Objective: This study aimed to identify patients’ experiences with the use of video consultations in place of face-to-face consultations, what it means to the patient to save the travel time, and how the roles between patients and health care professionals are experienced when using video consultation. This study concerns stable, not acutely ill, patients with hematological disease. Methods: The study was designed as an exploratory and qualitative study. Data were collected through participant observations and semistructured interviews and analyzed in a postphenomenological framework. Results: The data analysis revealed three categories: “Intimacy is not about physical presence,” “Handling technology,” and “Technology increases the freedom that the patients desire.” Conclusions: This study demonstrates what is important for patients with regards to telemedicine and how they felt about seeing health care professionals through a screen. It was found that intimacy can be mediated through a screen and physical presence is not as important to the patient as other things. The study further pointed out how patients valued being involved in the planning of their treatment. The patients also valued the freedom associated with telemedicine and actively took responsibility for their own course of treatment. Patients felt that video consultations allowed them to be free and active, despite their illness.

  • Source: iStock by Getty Images; Copyright: Monkey Business Images; URL: https://www.shutterstock.com/image-photo/nurse-discussing-records-senior-female-patient-128110415?irgwc=1&utm_medium=Affiliate&utm_campaign=TinEye&utm_source=77643&utm_term=; License: Licensed by the authors.

    Spanish-Speaking Hispanic Patients’ Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study

    Abstract:

    Background: Self-management of chronic conditions, such as cancer or diabetes, requires the coordination of care across multiple care settings. Current patient-centered, hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and play an active role in self-management. Objective: This study aimed to elicit Spanish-speaking Hispanic patients’ perspectives on the exchange and sharing of information during hospitalization. Methods: This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization. Results: Participants preferred paper-based Spanish language medical information. Doctors and nurses were key information providers and communicated with participants verbally, usually with the assistance of a translator. Participants expressed a desire to be informed about medication and treatments, including side effects and why there were changes in medication during hospitalization. In addition, they expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s). Conclusions: Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Nevertheless, future research on the influence of emotional readiness on the timing of medical information is needed.

  • Source: Image created by the Authors; Copyright: The Authors; URL: http://jopm.jmir.org/2018/4/e12338/; License: Creative Commons Attribution (CC-BY).

    The Impact of Visualization Format and Navigational Options on Laypeople’s Perception and Preference of Surgery Information Videos: Randomized Controlled...

    Abstract:

    Background: Patients need to be educated about possible treatment choices in order to make informed medical decisions. As most patients are medical laypeople, they find it difficult to understand complex medical information sufficiently to feel confident about a decision. Multimedia interventions such as videos are increasingly used to supplement personal consultations with medical professionals. Former research has shown that such interventions may have a positive effect on understanding, decision making, and emotional reactions. However, it is thus far unclear how different features of videos influence these outcomes. Objective: We aimed to examine the impact of visualization formats and basic navigational options in medical information videos about cruciate ligament surgery on recipients’ knowledge gain, emotions, attitude, and hypothetical decision-making ability. Methods: In a between-group randomized experiment (Study 1), 151 participants watched 1 of 4 videos (schematic vs realistic visualization; available vs unavailable navigational options). In a separate online survey (Study 2), 110 participants indicated their preference for a video design. All participants were medical laypeople without personal experience with a cruciate ligament rupture and were presented with a fictional decision situation. Results: In Study 1, participants who used navigational options (n=36) gained significantly more factual knowledge (P=.005) and procedural knowledge (P<.001) than participants who did not have or use navigational options (n=115). A realistic visualization induced more fear (P=.001) and disgust (P<.001) than a schematic video. Attitude toward the surgery (P=.02) and certainty regarding the decision for or against surgery (P<.001) were significantly more positive after watching the video than before watching the video. Participants who watched a schematic video rated the video significantly higher than that by participants who watched a realistic video (P<.001). There were no significant group differences with regard to hypothetical decision making and attitude toward the intervention. In addition, we did not identify any influence of the visualization format on knowledge acquisition. In Study 2, 58 of 110 participants (52.7%) indicated that they would prefer a schematic visualization, 26 (23.6%) preferred a realistic visualization, 17 (15.5%) wanted either visualization, and 9 (8.2%) did not want to watch a video at all. Of the participants who wanted to watch a video, 91 (90.1%) preferred to have navigational options, 3 (3.0%) preferred not to have navigational options, and 7 (6.9%) did not mind the options. Conclusion: Our study indicates that the perception of medical information videos is influenced by their design. Schematic videos with navigational options are the most helpful among all videos to avoid negative emotions and support knowledge acquisition when informing patients about an intervention. The visualization format and navigational options are important features that should be considered when designing medical videos for patient education. Trial Registration: Deutsches Register Klinischer Studien DRKS00016003; https://www.drks.de/drks_web/ navigate.do?navigationId= trial.HTML&TRIAL_ID=DRKS00016003 (Archived by WebCite at http://www.webcitation.org/746ASSAhN)

  • Source: Public Domain Pictures.net; Copyright: Public Domain Pictures.net; URL: https://www.publicdomainpictures.net/en/view-image.php?image=86523&picture=wrist-pain-2; License: Public Domain (CC0).

    Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study

    Abstract:

    Background: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients’ experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. Objective: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. Methods: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants’ written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. Results: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. Conclusions: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.

  • Source: US Army (Wesley P Elliott); Copyright: US Army; URL: https://www.army.mil/article/134370/pioneering_bariatric_pharmacy_at_fort_gordon; License: Public Domain (CC0).

    Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts’ and Citizen-Patients’ Perspectives

    Abstract:

    Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually nonexistent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts and the needs and expectations of populations in decisions about telehealth services. Objective: This study aimed to explore the perception of various stakeholders (decision makers, telehealth program and policy managers, clinicians, researchers, evaluators, and citizen-patients) regarding the involvement of citizen-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles, and challenges it raises for decision making. Methods: We used a qualitative research approach based on semistructured individual interviews, with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase the capacity for interpretation and analysis, we were guided by the principle of data triangulation. Results: Citizen-patient involvement in decision making is perceived more as a theoretical idea than as a practical reality in health care organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision making and make it more pragmatic within an innovation-driven health system. This involvement could also make citizen-patients ambassadors and promoters of telehealth and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the citizen-patient, who should be involved and how, claimant citizen-patient, the risk of professionalization of citizen-patient involvement, and the gap between decision time versus time to involve the citizen-patient. Conclusions: This study provides a basis for future research on the potential of involving citizen-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision making in the health sector, particularly in the field of technology development, are needed.

  • Subject participating in patient-centered design session. Source: Image created by the Authors; Copyright: The Authors; URL: http://jopm.jmir.org/2018/3/e10655/; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).

    Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental...

    Abstract:

    Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential for effective treatment of a wide variety of functional gastrointestinal disorders. Objective: The objective of our study was to determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. Methods: We augmented standard qualitative group session methods with patient-centered design methods to assess patient and parent preferences. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: Overall, 11 families (11 patients and 14 parents) participated in 2 group sessions. Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients’ primary concerns were for the privacy and confidentiality of their screening results. Patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. Conclusions: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office.

  • Source: Flickr.com; Copyright: Can Pac Swire; URL: https://www.flickr.com/photos/18378305@N00/16745620849/in/photolist-rfTPdi-acQqRt-eiH8Pt-bJPXhx-28881nu-acTeMb-rvKFER-e5TRHM-nXwmof-PuP9ci-6Uy2dA-4CvpbR-8xkEUY-cXCLZA-JomJnp-3d4YqN-reB7aJ-4FmYQb-8DpmrF-eoA4Kd-7yyYEj-C5LRtE-6Gj17u-6UYBUg-6iMN3t-6V3GNJ-A2sb; License: Creative Commons Attribution + Noncommercial (CC-BY-NC).

    Content-Sensitive Characterization of Peer Interactions of Highly Engaged Users in an Online Community for Smoking Cessation: Mixed-Methods Approach for...

    Abstract:

    Background: Online communities provide affordable venues for behavior change. However, active user engagement holds the key to the success of these platforms. In order to enhance user engagement and in turn, health outcomes, it is essential to offer targeted interventional and informational support. Objective: In this paper, we describe a content plus frequency framework to enable the characterization of highly engaged users in online communities and study theoretical techniques employed by these users through analysis of exchanged communication. Methods: We applied the proposed methodology for analysis of peer interactions within QuitNet, an online community for smoking cessation. Firstly, we identified 144 highly engaged users based on communication frequency within QuitNet over a period of 16 years. Secondly, we used the taxonomy of behavior change techniques, text analysis methods from distributional semantics, machine learning, and sentiment analysis to assign theory-driven labels to content. Finally, we extracted content-specific insights from peer interactions (n=159,483 messages) among highly engaged QuitNet users. Results: Studying user engagement using our proposed framework led to the definition of 3 user categories—conversation initiators, conversation attractors, and frequent posters. Specific behavior change techniques employed by top tier users (threshold set at top 3) within these 3 user groups were found to be goal setting, social support, rewards and threat, and comparison of outcomes. Engagement-specific trends within sentiment manifestations were also identified. Conclusions: Use of content-inclusive analytics has offered deep insight into specific behavior change techniques employed by highly engaged users within QuitNet. Implications for personalization and active user engagement are discussed.

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  • Outcomes of Importance for MRSA Decolonization Identified by Patient and Parent Advisors: A Qualitative Study

    Date Submitted: Jun 7, 2019

    Open Peer Review Period: Jun 10, 2019 - Aug 5, 2019

    Background: Skin and soft tissue infections (SSTI) due to community acquired Methicillin-Resistant Staphylococcus aureus (MRSA) can lead to a number of significant outcomes including hospitalization a...

    Background: Skin and soft tissue infections (SSTI) due to community acquired Methicillin-Resistant Staphylococcus aureus (MRSA) can lead to a number of significant outcomes including hospitalization and/or surgical procedures like incision and drainage. Unfortunately, these infections can present in children and adolescents without any other medical problems. Procedures to decolonize or remove the bacteria from the skin and nose of these patients are sometimes recommended in order to prevent the large rate of infections that reoccur. Objective: The objective of this component of the MRSA Eradication and Decolonization in Children (MEDiC) study was to uncover outcomes of importance to patients and their parents when it comes to MRSA decolonization. Methods: A four-hour human-centered design (HCD) workshop was held with five adolescents (from age 10 to 18) who had experienced an incision and drainage procedure and eleven parents of children who had experienced an incision and drainage procedure. The workshop explored the patient and family experience with skin infection to uncover patient-centered outcomes of MRSA treatment. The team analyzed audio and artifacts created during the workshop and coded for thematic similarity. The final themes represent patient-centered outcome domains to be measured in the MEDIC comparative effectiveness trial. Results: The workshop identified nine outcomes of importance to patients and their parents – fewer MRSA outbreaks, improved emotional health, improved self-perception, decreased social stigma, increased amount of free time, increased control over free time, fewer days of school or work missed, decreased physical pain and discomfort, and decreased financial burden. Conclusions: This study represents an innovative HCD approach to engaging patients and families with lived experience with MRSA SSTI in study design and trial development to determine meaningful patient-centered outcomes. Through this crucial participation, we were able to identify nine major recurrent themes. These themes were used to develop the primary and secondary outcome measures for MEDIC, a prospectively enrolling comparative effectiveness trial. Clinical Trial: NCT02127658

  • User experience of a post-TBI sexuality information toolkit

    Date Submitted: May 29, 2019

    Open Peer Review Period: May 31, 2019 - Jul 26, 2019

    Background: After having sustained a traumatic brain injury (TBI), individuals are at risk of impairments in information processing, abstract reasoning, executive functioning, attention, and memory. T...

    Background: After having sustained a traumatic brain injury (TBI), individuals are at risk of impairments in information processing, abstract reasoning, executive functioning, attention, and memory. This affects different aspects of communicative functioning. Specific strategies can be adopted to improve the provision of health information to individuals with TBI, including the development of written material and non-written media. Objective: A user-centered design was adopted to codevelop five audiovisual presentations, a double-sided information sheet and a checklist aimed at informing individuals about post-TBI sexuality. The last phase of the project consisted of the assessment of the user experience of the information toolkit, based on the User Experience Honeycomb model. Methods: Two focus groups and one individual semi-structured interview were conducted with individuals with moderate to severe TBI. Results: The participants mentioned that the toolkit was easily usable, and would have fulfilled a need for information on post-TBI sexuality during or after rehabilitation. They mostly agreed that the minimalist visual content was well organized, attractive and relevant. The information was easily located, and the tools were accessible in terms of reading and visioning. The content was also considered credible. Conclusions: These results confirmed the assumption that this patient-oriented project led to the development of a usable toolkit, matching the needs for adapted

  • Patient and Provider Perspectives Regarding Criteria for Patient Prioritization in Rehabilitation Programs

    Date Submitted: Apr 25, 2019

    Open Peer Review Period: Apr 30, 2019 - Jun 25, 2019

    Background: Queueing patients on waiting lists is a common practice to manage access to rehabilitation services. To increase fairness and equity in access, a strategy emerging from the literature is p...

    Background: Queueing patients on waiting lists is a common practice to manage access to rehabilitation services. To increase fairness and equity in access, a strategy emerging from the literature is patient prioritization. The goal is for patients with the greatest needs to be treated first and for patient wait times to be determined objectively on the basis of explicit criteria. Selecting criteria, however, is a complex task because it is important to simultaneously consider the objectives of all stakeholders. Objective: The aim of this study was to compare service users’ and service providers’ perspectives regarding patient prioritization criteria in two rehabilitation programs. Methods: We conducted a multiple case study in two rehabilitation programs at the Centre intégré universitaire de santé et de services sociaux de la Capitale-Nationale in Quebec City (Canada), i.e. a driving evaluation program (DEP) and a compression garment manufacturing program (CGMP). We sent a web-based survey asking two groups (patients and providers) of informed stakeholders to individually produce a set of criteria. We then conducted an inductive thematic analysis where each group’s individual answers were coded and combined in a single set of criteria. Results: Stakeholders from the DEP identified a total of 22 criteria to prioritize patients while those from the CGMP listed 27 criteria. Providers shared 76% of the criteria mentioned by patients. Some criteria, such as age, occupation, functional level, pain, absence of caregiver, and time since referral, were considered important by both stakeholders in both programs. Conclusions: Patients and providers tended to have similar opinions about a majority of the criteria to prioritize patients in waitlists. Nonetheless, our study confirms that patients and providers base their choices on different types of knowledge and values, which explains some of the differences observed. Taking into consideration the opinions of all stakeholders concerning prioritization criteria is an important part of the decision-making process, based on a multiple constituency approach.

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