Journal of Participatory Medicine最新文献

{"title":"Use of Video Consultations for Patients With Hematological Diseases From a Patient Perspective: Qualitative Study.","authors":"Nina Primholdt Christensen,&nbsp;Dorthe Boe Danbjørg","doi":"10.2196/11089","DOIUrl":"https://doi.org/10.2196/11089","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>The data analysis revealed three categories: \"Intimacy is not about physical presence,\" \"Handling technology,\" and \"Technology increases the freedom that the patients desire.\"</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e11089"},"PeriodicalIF":0.0,"publicationDate":"2018-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434074/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485104","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Spanish-Speaking Hispanic Patients' Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study.","authors":"Marge Benham-Hutchins,&nbsp;Sharon A Brown,&nbsp;Erin E Donovan,&nbsp;Henry Guevara,&nbsp;Alisha H Johnson","doi":"10.2196/10782","DOIUrl":"https://doi.org/10.2196/10782","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>This study aimed to elicit Spanish-speaking Hispanic patients' perspectives on the exchange and sharing of information during hospitalization.</p><p><strong>Methods: </strong>This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization.</p><p><strong>Results: </strong>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).</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e10782"},"PeriodicalIF":0.0,"publicationDate":"2018-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434076/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485954","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Impact of Visualization Format and Navigational Options on Laypeople's Perception and Preference of Surgery Information Videos: Randomized Controlled Trial and Online Survey.","authors":"Marie Eggeling,&nbsp;Martina Bientzle,&nbsp;Thomas Shiozawa,&nbsp;Ulrike Cress,&nbsp;Joachim Kimmerle","doi":"10.2196/12338","DOIUrl":"https://doi.org/10.2196/12338","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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 suppo","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e12338"},"PeriodicalIF":0.0,"publicationDate":"2018-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485955","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study.","authors":"Graham George Macdonald,&nbsp;Cheryl Koehn,&nbsp;Gail Attara,&nbsp;Allan Stordy,&nbsp;Marilee Allerdings,&nbsp;Jenny Leese,&nbsp;Linda C Li,&nbsp;Catherine L Backman","doi":"10.2196/10815","DOIUrl":"https://doi.org/10.2196/10815","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 4","pages":"e10815"},"PeriodicalIF":0.0,"publicationDate":"2018-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434083/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9434063","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Involving Citizen-Patients in the Development of Telehealth Services: Qualitative Study of Experts' and Citizen-Patients' Perspectives.","authors":"Hassane Alami,&nbsp;Marie-Pierre Gagnon,&nbsp;Jean-Paul Fortin","doi":"10.2196/10665","DOIUrl":"https://doi.org/10.2196/10665","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e10665"},"PeriodicalIF":0.0,"publicationDate":"2018-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434098/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485956","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental Health Care Model for Pediatric Gastroenterology.","authors":"Stephanie E Hullmann,&nbsp;Stacy A Keller,&nbsp;Dustin O Lynch,&nbsp;Kelli Jenkins,&nbsp;Courtney Moore,&nbsp;Brandon Cockrum,&nbsp;Sarah E Wiehe,&nbsp;Aaron E Carroll,&nbsp;William E Bennett","doi":"10.2196/10655","DOIUrl":"https://doi.org/10.2196/10655","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 3","pages":"e10655"},"PeriodicalIF":0.0,"publicationDate":"2018-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434069/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485105","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The usage of social media encouraged patients' active participation in medical decision-making: cross-sectional survey (Preprint)","authors":"Yen-Yuan Chen, Yu-Fang Cheng, Chau-Chung Wu, T. Chu","doi":"10.2196/11828","DOIUrl":"https://doi.org/10.2196/11828","url":null,"abstract":"\u0000 BACKGROUND\u0000 The rapid advance of information technology since the end of twentieth century has deeply influenced the ways people gather health information to use as references for medical decision-making. Studies have overwhelmingly been focused on the association between health information in the media and the usage of medical care, nevertheless, none of them have examined the association between the usage of social media for gathering health information and patients’ active participation in medical decision-making.\u0000 \u0000 \u0000 OBJECTIVE\u0000 The objective of this study was to examine the influence of the health information obtained from social media has on patients’ preference to actively participate in medical decision-making.\u0000 \u0000 \u0000 METHODS\u0000 The participants in this study were openly recruited from the patients who were admitted to the cardiology inpatient unit in the Department of Internal Medicine with an admission diagnosis of coronary artery disease. We used Control Preference Scale to estimate each patient’s preference to play an active role, a collaborative role, or a passive role in medical decision-making. We conducted multivariate logistic regression for examining the association between “gathering health information from social media” and “playing an active role in medical decision-making”, by including the confounding variables which have an association with the outcome variable with a p value of less than .30.\u0000 \u0000 \u0000 RESULTS\u0000 A total of 156 patients participated in this study. After adjusting for the confounding variables, patients who gathered health information related to coronary artery disease from social media were more likely to play an active role in medical decision-making (odds ratio = 2.85, p = 0.04). Furthermore, the odds of patients with one-year increment of their age for playing an active role in medical decision-making was decreased approximately by 6.20% (odds ratio = 0.94, p = 0.01), and patients cared for by Physician C preferred to play an active role as compared to other physicians (odds ratio = 5.37, p = 0.04).\u0000 \u0000 \u0000 CONCLUSIONS\u0000 Although health information gathered from social media may have been discussed and validated by one’s companions on social media, there is no guarantee that the health information is correct. If the health information gathered from social media is correct, patients’ active participation in medical decision-making is helpful in facilitating physician-patient communication towards that aim. Future studies may be focused on how information seekers use modern information technology to gather correct health information.\u0000 \u0000 \u0000 CLINICALTRIAL\u0000 N/A\u0000","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"1 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2018-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49040339","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Content-Sensitive Characterization of Peer Interactions of Highly Engaged Users in an Online Community for Smoking Cessation: Mixed-Methods Approach for Modeling User Engagement in Health Promotion Interventions.","authors":"Sahiti Myneni,&nbsp;Vishnupriya Sridharan,&nbsp;Nathan Cobb,&nbsp;Trevor Cohen","doi":"10.2196/jopm.9745","DOIUrl":"https://doi.org/10.2196/jopm.9745","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Objective: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 3","pages":"e9"},"PeriodicalIF":0.0,"publicationDate":"2018-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434072/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485103","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test.","authors":"Tamara S Hannon, Courtney M Moore, Erika R Cheng, Dustin O Lynch, Lisa G Yazel-Smith, Gina Em Claxton, Aaron E Carroll, Sarah E Wiehe","doi":"10.2196/jopm.9652","DOIUrl":"10.2196/jopm.9652","url":null,"abstract":"<p><strong>Background: </strong>Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents' thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process.</p><p><strong>Objective: </strong>The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board.</p><p><strong>Methods: </strong>The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution's Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2.</p><p><strong>Results: </strong>Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting.</p><p><strong>Conclusions: </strong>Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 2","pages":"e8"},"PeriodicalIF":0.0,"publicationDate":"2018-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434065/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9395818","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Utilizing Consumer Technology (Apple's ResearchKit) for Medical Studies by Patients and Researchers: Proof of Concept of the Novel Platform REach.","authors":"Marleen Mhj van Gelder,&nbsp;Lucien Jlpg Engelen,&nbsp;Thijs Sondag,&nbsp;Tom H van de Belt","doi":"10.2196/jopm.9335","DOIUrl":"https://doi.org/10.2196/jopm.9335","url":null,"abstract":"<p><p>Medical research suffers from declining response rates, hampering the quest for answers to clinically relevant research questions. Furthermore, objective data on a number of important study variables, such as physical activity, sleep, and nutrition, are difficult to collect with the traditional methods of data collection. Reassuringly, current technological developments could overcome these limitations. In addition, they may enable research being established by patients themselves provided that they have access to a user-friendly platform. Using the features of Apple's ResearchKit, an informed consent procedure, questionnaire, linkage with HealthKit data, and \"active tasks\" may be administered through a publicly available app. However, ResearchKit requires programming skills, which many patients and researchers lack. Therefore, we developed a platform (REach) with drag and drop functionalities producing a ready-to-use code that can be embedded in existing or new apps. Participants in the pilot study were very satisfied with data collection through REach and measurement error was minimal. In the era of declining participation rates in observational studies and patient involvement, new methods of data collection, such as REach, are essential to ensure that clinically relevant research questions are validly answered. Due to linkage with HealthKit and active tasks, objective health data that are impossible to collect with the traditional methods of data collection can easily be collected.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":" ","pages":"e6"},"PeriodicalIF":0.0,"publicationDate":"2018-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434096/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38485100","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}