Journal of Participatory Medicine最新文献

{"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}

{"title":"A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether): Feasibility Study.","authors":"Melissa Basile,&nbsp;Johanna Andrews,&nbsp;Sonia Jacome,&nbsp;Meng Zhang,&nbsp;Andrzej Kozikowski,&nbsp;Negin Hajizadeh","doi":"10.2196/jopm.9877","DOIUrl":"https://doi.org/10.2196/jopm.9877","url":null,"abstract":"<p><strong>Background: </strong>Severe Chronic Obstructive Pulmonary Disease patients are often unprepared to make decisions about accepting intubation for respiratory failure. We developed a Web-based decision aid, InformedTogether, to facilitate severe Chronic Obstructive Pulmonary Disease patients' preparation for decision making about whether to accept invasive mechanical ventilation for respiratory failure.</p><p><strong>Objective: </strong>We describe feasibility testing of the InformedTogether decision aid.</p><p><strong>Methods: </strong>Mixed methods, pre- and postintervention feasibility study in outpatient pulmonary and geriatric clinics. Clinicians used InformedTogether with severe Chronic Obstructive Pulmonary Disease patients. Patient-participants completed pre- and postassessments about InformedTogether use. The outcomes measured were the following: feasibility/acceptability, communication (Combined Outcome Measure for Risk Communication [COMRADE], Medical Communication Competency Scale [MCCS], Observing Patient Involvement [OPTION] scales), and effectiveness of InformedTogether on changing patients' knowledge, Decisional Conflict Scale, and motivation.</p><p><strong>Results: </strong>We enrolled 11 clinicians and 38 Chronic Obstructive Pulmonary Disease patients at six sites. Feasibility/acceptability: Clinicians and patients gave positive responses to acceptability questions (mean 74.1/89 max [SD 7.24] and mean 59.63/61 [SD 4.49], respectively). Communication: 96% of clinicians stated InformedTogether improved communication (modified MCCS mean 44.54/49 [SD 2.97]; mean OPTION score 32.03/48 [SD 9.27]; mean COMRADE Satisfaction 4.31/5.0 [SD 0.58]; and COMRADE Confidence 4.18/5.0 [SD 0.56]). Preference: Eighty percent of patients discussed preferences with their surrogates by 1-month. Effectiveness: Knowledge scores increased significantly after using InformedTogether (mean difference 3.61 [SD 3. 44], <i>P</i>=.001) and Decisional Conflict decreased (mean difference Decisional Conflict Scale pre/post -13.76 [SD 20.39], <i>P</i>=.006). Motivation increased after viewing the decision aid.</p><p><strong>Conclusions: </strong>InformedTogether supports high-quality communication and shared decision making among Chronic Obstructive Pulmonary Disease patients, clinicians, and surrogates. The increased knowledge and opportunity to deliberate and discuss treatment choices after using InformedTogether should lead to improved decision making at the time of critical illness.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 2","pages":"e7"},"PeriodicalIF":0.0,"publicationDate":"2018-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7251980/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37982604","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 and Family Involvement: A Discussion of Co-Led Redesign of Healthcare Services.","authors":"Sarah Jane Prior, Steven Campbell","doi":"10.2196/jopm.8957","DOIUrl":"10.2196/jopm.8957","url":null,"abstract":"<p><p>The involvement of patients and their families in the redesign of healthcare services is an important option in providing a service that addresses the patients' needs and improves health outcomes. However, it is a resource-intensive approach, and it is currently not clear when it should be used, and what should be the reasoning behind this decision. Some health systems of international standing have created a patient engagement program as a selling point. This paper discusses how co-led redesign can be beneficial in improving health service and more effectively engaging patients. Potential barriers for patient involvement are discussed. Patient involvement can be integrated into the health system at three main levels of engagement: direct care, organizational design and governance, and policy-making. The aim of this paper is to describe how co-led redesign is compatible with different levels of patient involvement and to address the challenges in delivering a co-led redesign in healthcare. Co-led redesign not only involves the collection of quantitative data for assessing the current systems but also the collection of qualitative data through patient, family, and staff interviews to determine the barriers to patient satisfaction. Co-led redesign is a resource-rich process that requires expertise in data collection and a clinical group that is devoted to implementing recommended changes. Currently, a number of countries have utilized co-led redesign for many different types of healthcare services. Resource availability and cost, process time, and lack of outcome measures are three major limiting factors.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 1","pages":"e5"},"PeriodicalIF":0.0,"publicationDate":"2018-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7489197/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9731000","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":"Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions.","authors":"Sara Huston Katsanis, Mollie A Minear, Azita Sadeghpour, Heidi Cope, Yezmin Perilla, Robert Cook-Deegan, Nicholas Katsanis, Erica E Davis, Misha Angrist","doi":"10.2196/jopm.8958","DOIUrl":"10.2196/jopm.8958","url":null,"abstract":"<p><strong>Background: </strong>Unlike aggregate research on groups of participants with a particular disorder, genomic research on discrete families' rare conditions could result in data of use to families, their healthcare, as well as generating knowledge on the human genome.</p><p><strong>Objective: </strong>In a study of families seeking to rule in/out genetic causes for their children's medical conditions via exome sequencing, we solicited their views on the importance of genomic information. Our aim was to learn the interests of parents in seeking genomic research data and to gauge their responsiveness and engagement with the research team.</p><p><strong>Methods: </strong>At enrollment, we offered participants options in the consent form for receiving potentially clinically relevant research results. We also offered an option of being a \"partner\" versus a \"traditional\" participant; partners could be re-contacted for research and study activities. We invited adult partners to complete a pre-exome survey, attend annual family forums, and participate in other inter-family interaction opportunities.</p><p><strong>Results: </strong>Of the 385 adults enrolled, 79% opted for \"partnership\" with the research team. Nearly all (99.2%) participants opted to receive research results pertaining to their children's primary conditions. A majority indicated the desire to receive additional clinically relevant outside the scope of their children's conditions (92.7%) and an interest in non-clinically relevant genetic information (82.7%).</p><p><strong>Conclusions: </strong>Most participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants-both partners and traditional-expected to receive all genetic information resulting from the research study.</p>","PeriodicalId":36208,"journal":{"name":"Journal of Participatory Medicine","volume":"10 1","pages":"e2"},"PeriodicalIF":0.0,"publicationDate":"2018-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7489233/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9400612","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}