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A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO.

ABSTRACT: BACKGROUND:Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users' acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input and preferences in the design and development process is an important step toward developing meaningful interventions and possibly strengthening treatment outcomes. OBJECTIVE:The aim of this study was to design and develop a user-centered, evidence-based eHealth self-management intervention for people with chronic pain. METHODS:The study employed a multidisciplinary and user-centered design approach. Overall, 20 stakeholders from the project team (ie, 7 researchers, 5 editors, 7 software developers, and 1 user representative), together with 33 external stakeholders (ie, 12 health care providers, 1 health care manger, 1 eHealth research psychologist, and 17 patients with chronic pain and 2 of their spouses) participated in a user-centered development process that included workshops, intervention content development, and usability testing. Intervention content was developed and finalized based on existing evidence, stakeholder input, and user testing. Stakeholder input was examined through qualitative analyses with rapid and in-depth analysis approaches. RESULTS:Analyses from stakeholder input identified themes including a need for reliable, trustworthy, and evidence-based content, personalization, options for feedback, behavioral tracking, and self-assessment/registration as factors to include in the intervention. Evidence-based intervention content development resulted in one face-to-face introduction session and 9 app-based educational and exercise-based modules. Usability testing provided further insight into how to optimize the design of the intervention to the user group, identifying accessibility and a simple design to be essential. CONCLUSIONS:The design and development process of eHealth interventions should strive to combine well-known evidence-based concepts with stakeholder input. This study, designing and developing the pain management intervention EPIO, illustrates how a stakeholder-centered design approach can provide essential input in the development of an eHealth self-management intervention for people with chronic pain. TRIAL REGISTRATION:ClinicalTrials.gov NCT03705104; https://clinicaltrials.gov/ct2/show/NCT03705104.

SUBMITTER: Ledel Solem IK

PROVIDER: S-EPMC7001051 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO.

Ledel Solem Ingrid Konstanse IK Varsi Cecilie C Eide Hilde H Kristjansdottir Olöf Birna OB Børøsund Elin E Schreurs Karlein M G KMG Waxenberg Lori B LB Weiss Karen E KE Morrison Eleshia J EJ Haaland-Øverby Mette M Bevan Katherine K Zangi Heidi Andersen HA Stubhaug Audun A Solberg Nes Lise L

Journal of medical Internet research 20200121 1

<h4>Background</h4>Chronic pain conditions are complicated and challenging to live with. Electronic health (eHealth) interventions show promise in helping people cope with chronic illness, including pain. The success of these interventions depends not only on the technology and intervention content but also on the users' acceptance and adherence. Involving all stakeholders (eg, patients, spouses, health care providers, designers, software developers, and researchers) and exploring their input an ...[more]

PMID: 31961331

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Project description:BackgroundPostfracture acute pain is often inadequately managed in older adults. Mobile health (mHealth) technologies can offer opportunities for self-management of pain; however, insufficient apps exist for acute pain management after a fracture, and none are designed for an older adult population.ObjectiveThis study aims to design, develop, and evaluate an mHealth app prototype using a human-centered design approach to support older adults in the self-management of postfracture acute pain.MethodsThis study used a multidisciplinary and user-centered design approach. Overall, 7 stakeholders (ie, 1 clinician-researcher specialized in internal medicine, 2 user experience designers, 1 computer science researcher, 1 clinical research assistant researcher, and 2 pharmacists) from the project team, together with 355 external stakeholders, were involved throughout our user-centered development process that included surveys, requirement elicitation, participatory design workshops, mobile app design and development, mobile app content development, and usability testing. We completed this study in 3 phases. We analyzed data from prior surveys administered to 305 members of the Canadian Osteoporosis Patient Network and 34 health care professionals to identify requirements for designing a low-fidelity prototype. Next, we facilitated 4 participatory design workshops with 6 participants for feedback on content, presentation, and interaction with our proposed low-fidelity prototype. After analyzing the collected data using thematic analysis, we designed a medium-fidelity prototype. Finally, to evaluate our medium-fidelity prototype, we conducted usability tests with 10 participants. The results informed the design of our high-fidelity prototype. Throughout all the phases of this development study, we incorporated inputs from health professionals to ensure the accuracy and validity of the medical content in our prototypes.ResultsWe identified 3 categories of functionalities necessary to include in the design of our initial low-fidelity prototype: the need for support resources, diary entries, and access to educational materials. We then conducted a thematic analysis of the data collected in the design workshops, which revealed 4 themes: feedback on the user interface design and usability, requests for additional functionalities, feedback on medical guides and educational materials, and suggestions for additional medical content. On the basis of these results, we designed a medium-fidelity prototype. All the participants in the usability evaluation tests found the medium-fidelity prototype useful and easy to use. On the basis of the feedback and difficulties experienced by participants, we adjusted our design in preparation for the high-fidelity prototype.ConclusionsWe designed, developed, and evaluated an mHealth app to support older adults in the self-management of pain after a fracture. The participants found our proposed prototype useful for managing acute pain and easy to interact with and navigate. Assessment of the clinical outcomes and long-term effects of our proposed mHealth app will be evaluated in the future.

Project description:BackgroundAssistive technologies can help people living with dementia maintain their everyday activities. Nevertheless, there is a gap between the potential and use of these materials. Involving future users may help close this gap, but the impact on people with dementia is unclear.ObjectiveWe aimed to determine if user-centered development of smartwatch-based interventions together with people with dementia is feasible. In addition, we evaluated the extent to which user feedback is plausible and therefore helpful for technological improvements.MethodsWe examined the interactions between smartwatches and people with dementia or people with mild cognitive impairment. All participants were prompted to complete 2 tasks (drinking water and a specific cognitive task). Prompts were triggered using a smartphone as a remote control and were repeated up to 3 times if participants failed to complete a task. Overall, 50% (20/40) of the participants received regular prompts, and 50% (20/40) received intensive audiovisual prompts to perform everyday tasks. Participants' reactions were observed remotely via cameras. User feedback was captured via questionnaires, which included topics like usability, design, usefulness, and concerns. The internal consistency of the subscales was calculated. Plausibility was also checked using qualitative approaches.ResultsParticipants noted their preferences for particular functions and improvements. Patients struggled with rating using the Likert scale; therefore, we assisted them with completing the questionnaire. Usability (mean 78 out of 100, SD 15.22) and usefulness (mean 9 out of 12) were rated high. The smartwatch design was appealing to most participants (31/40, 76%). Only a few participants (6/40, 15%) were concerned about using the watch. Better usability was associated with better cognition. The observed success and self-rated task comprehension were in agreement for most participants (32/40, 80%). In different qualitative analyses, participants' responses were, in most cases, plausible. Only 8% (3/40) of the participants were completely unaware of their irregular task performance.ConclusionsPeople with dementia can have positive experiences with smartwatches. Most people with dementia provided valuable information. Developing assistive technologies together with people with dementia can help to prioritize the future development of functional and nonfunctional features.

Project description:BackgroundThe COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients' values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient's wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care.ObjectiveTo provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center's EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation.MethodsWe first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab's main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted.ResultsWe have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content.ConclusionsIt is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.

Project description:BackgroundBipolar disorder is a serious mental illness that results in significant morbidity and mortality. Pharmacotherapy is the primary treatment for bipolar disorder; however, adjunctive psychotherapy can help individuals use self-management strategies to improve outcomes. Yet access to this therapy is limited. Smartphones and other technologies have the potential to increase access to therapeutic strategies that enhance self-management while simultaneously providing real-time user feedback and provider alerts to augment care.ObjectiveThis paper describes the user-centered development of LiveWell, a smartphone-based self-management intervention for bipolar disorder, to contribute to and support the ongoing improvement and dissemination of technology-based mental health interventions.MethodsIndividuals with bipolar disorder first participated in a field trial of a simple smartphone app for self-monitoring of behavioral targets. To develop a complete technology-based intervention for bipolar disorder, this field trial was followed by design sessions, usability testing, and a pilot study of a smartphone-based self-management intervention for bipolar disorder. Throughout all phases of development, intervention revisions were made based on user feedback.ResultsThe core of the LiveWell intervention consists of a daily self-monitoring tool, the Daily Check-in. This self-monitoring tool underwent multiple revisions during the user-centered development process. Daily Check-in mood and thought rating scales were collapsed into a single wellness rating scale to accommodate user development of personalized scale anchors. These anchors are meant to assist users in identifying early warning signs and symptoms of impending episodes to take action based on personalized plans. When users identified personal anchors for the wellness scale, the anchors most commonly reflected behavioral signs and symptoms (40%), followed by cognitive (25%), mood (15%), physical (10%), and motivational (7%) signs and symptoms. Changes to the Daily Check-in were also made to help users distinguish between getting adequate sleep and keeping a regular routine. At the end of the pilot study, users reported that the Daily Check-in made them more aware of early warning signs and symptoms and how much they were sleeping. Users also reported that they liked personalizing their anchors and plans and felt this process was useful. Users experienced some difficulties with developing, tracking, and achieving target goals. Users also did not consistently follow up with app recommendations to contact providers when Daily Check-in data suggested they needed additional assistance. As a result, the human support roles for the technology were expanded beyond app use support to include support for self-management and clinical care communication. The development of these human support roles was aided by feedback on the technology's usability from the users and the coaches who provided the human support.ConclusionsUser input guided the development of intervention content, technology, and coaching support for LiveWell. Users valued the provision of monitoring tools and the ability to personalize plans for staying well, supporting the role of monitoring and personalization as important features of digital mental health technologies. Users also valued human support of the technology in the form of a coach, and user difficulties with aspects of self-management and care-provider communication led to an expansion of the coach's support roles. Obtaining feedback from both users and coaches played an important role in the development of both the LiveWell technology and human support. Attention to all stakeholders involved in the use of mental health technologies is essential for optimizing intervention development.

Project description:BackgroundPhantom limb pain is a frequent and persistent problem following amputation. Achieving sustainable favorable effects on phantom limb pain requires therapeutic interventions such as mirror therapy that target maladaptive neuroplastic changes in the central nervous system. Unfortunately, patients' adherence to unsupervised exercises is generally poor and there is a need for effective strategies such as telerehabilitation to support long-term self-management of patients with phantom limb pain.ObjectiveThe main aim of this study was to describe the user-centered approach that guided the design and development of a telerehabilitation platform for patients with phantom limb pain. We addressed 3 research questions: (1) Which requirements are defined by patients and therapists for the content and functions of a telerehabilitation platform and how can these requirements be prioritized to develop a first prototype of the platform? (2) How can the user interface of the telerehabilitation platform be designed so as to match the predefined critical user requirements and how can this interface be translated into a medium-fidelity prototype of the platform? (3) How do patients with phantom limb pain and their treating therapists judge the usability of the medium-fidelity prototype of the telerehabilitation platform in routine care and how can the platform be redesigned based on their feedback to achieve a high-fidelity prototype?MethodsThe telerehabilitation platform was developed using an iterative user-centered design process. In the first phase, a questionnaire followed by a semistructured interview was used to identify the user requirements of both the patients and their physical and occupational therapists, which were then prioritized using a decision matrix. The second phase involved designing the interface of the telerehabilitation platform using design sketches, wireframes, and interface mock-ups to develop a low-fidelity prototype. Heuristic evaluation resulted in a medium-fidelity prototype whose usability was tested in routine care in the final phase, leading to the development of a high-fidelity prototype.ResultsA total of 7 categories of patient requirements were identified: monitoring, exercise programs, communication, settings, background information, log-in, and general requirements. One additional category emerged for therapists: patient management. Based on these requirements, patient and therapist interfaces for the telerehabilitation platform were developed and redesigned by the software development team in an iterative process, addressing the usability problems that were reported by the users during 4 weeks of field testing in routine care.ConclusionsOur findings underline the importance of involving the users and other stakeholders early and continuously in an iterative design process, as well as the need for clear criteria to identify critical user requirements. A decision matrix is presented that incorporates the views of various stakeholders in systematically rating and prioritizing user requirements. The findings and lessons learned might help health care providers, researchers, software designers, and other stakeholders in designing and evaluating new teletreatments, and hopefully increase the likelihood of user acceptance.

Project description:Long-term admissions in psychiatric facilities often result in a gradual erosion of the identity of people diagnosed with severe mental illnesses (SMIs) into merely "patient." Moreover, experiences of loss often reduced people's sense of purpose. Although regaining a multidimensional identity and a sense of purpose are essential for personal recovery, few interventions specifically address this, while at the same time take people's often considerable cognitive and communicative disabilities into consideration. This study describes the development process of a new intervention through user-centered design (UCD). UCD is an iterative process in which a product (in this case, an intervention) is developed in close cooperation with future users, such that the final product matches their needs. The design process included three phases: an analysis, design, and evaluation phase. In the analysis phase, the "problem" was defined, users' needs were identified, and design criteria were established. In the design phase, the collected information served as input to create a testable prototype using a process of design and redesign, in close collaboration with service users and other stakeholders. This resulted in an intervention entitled "This is Me" (TiM) in which service users, together with a self-chosen teammate, actively engage in new experiences on which they are prompted to reflect. Finally, in the evaluation phase, TiM was implemented and evaluated in a real-life setting. In a small feasibility pilot, we found indications that some people indeed demonstrated increased reflection on their identity during the intervention. Furthermore, TiM seemed to benefit the relationship between the service users and the mental health professionals with whom they underwent the experiences. The pilot also revealed some aspects of the (implementation of) TiM that can be improved. Overall, we conclude that UCD is a useful method for the development of a new psychosocial intervention. The method additionally increased our knowledge about necessary factors in targeting personal recovery for people with complex mental health needs. Moreover, we conclude that TiM is a promising tool for supporting people with SMI in redeveloping a multidimensional identity and a renewed sense of purpose.

Project description:BackgroundThe involvement of patient research partners (PRPs) in research aims to safeguard the needs of patient groups and produce new interventions that are developed based on patient input. Myocardial infarction with nonobstructive coronary arteries (MINOCA), unlike acute myocardial infarction (MI) with obstructive coronary arteries, is presented with no significant obstructive coronary artery disease. Patients with this diagnosis are a subset of those diagnosed with traditional MI and often need more psychological support, something that is presently not established in the current treatment scheme in Swedish health care or elsewhere, to our knowledge. An internet-delivered intervention might offer patients with MINOCA the opportunity to access a psychological treatment that is tailored to their specific needs after MINOCA and could therefore supplement the existing medical care in an easily accessible format.ObjectiveThis paper aims to describe the development of a therapist-guided, internet-delivered psychological intervention designed specifically for patients with MINOCA.MethodsThe study used a participatory design that involved 7 PRPs diagnosed with MINOCA who collaborated with a team consisting of researchers, cardiologists, and psychologists. Intervention content was developed iteratively and presented to the PRPs across several prototypes, each continually adjusted and redesigned according to the feedback received. The intervention and experience of it were discussed by PRPs in a final meeting and then presented to a panel of 2 clinical psychologists and a cardiologist for further input.ResultsThe outcome of the collaboration between PRPs and the research group produced a web-based psychological 9-step program focusing on stress, worry, and valued action. The input from PRPs contributed substantially to the therapy content, homework tasks, interactive activities, multimedia, and design presentation.ConclusionsWorking with PRPs to develop an intervention for people with MINOCA produced a web-based intervention that can be further evaluated with the goal of offering a new psychological treatment option to a patient group currently without one. Direct contribution from PRPs enabled us to obtain relevant, insightful, and valuable feedback that was put towards the overall design and content of the intervention.

Project description:BackgroundAlthough eHealth technology makes it possible to improve the management of complex health care systems and follow up on chronic patients, it is not without challenges, thus requiring the development of efficient programs and graphic user interface (GUI) features. Similar information technology tools are crucial, as health care populations are going to have to endure social distancing measures in the forthcoming months and years.ObjectiveThis study aims to provide adequate and personalized support to complex health care populations by developing a specific web-based mobile app. The app is designed around the patient and adapted to specific groups, for example, people with complex or rare diseases, autism, or disabilities (especially among children) as well as Alzheimer or senile dementia. The app's core features include the collection, labeling, analysis, and sorting of clinical data. Furthermore, it authorizes a network of people around the patient to securely access the data contained in his or her electronic health record.MethodsThe application was designed according to the paradigms of patient-centered care and user-centered design (UCD). It considers the patient as the main empowered and motivating factor in the management of his or her well-being. Implementation was informed through a family needs and technology perception assessment. We used 3 interdisciplinary focus groups and 2 assessment surveys to study the contexts of app use, subpopulation management, and preferred functions. Finally, we developed an observational study involving 116 enrolled patients and 253 system users, followed by 2 feedback surveys to evaluate the performance and impact of the app.ResultsIn the validated general GUI, we developed 10 user profiles with different privacy settings. We tested 81 functions and studied a modular structure based on disease or medical area. This allowed us to identify replicable methods to be applied to module design. The observational study not only showed good family and community engagement but also revealed some limitations that need to be addressed. In total, 42 of 51 (82%) patients described themselves as satisfied or very satisfied. Health care providers reported facilitated communication with colleagues and the need to support data quality.ConclusionsThe experimented solution addressed some of the health system challenges mentioned by the World Health Organization: usability appears to be significantly improved when the GUI is designed according to patients' UCD mental models and when new media and medical literacy are promoted. This makes it possible to maximize the impact of eHealth products, thereby overcoming some crucial gaps reported in the literature. Two main features seemed to have potential benefit compared with other eHealth products: the modeling, within the app, of both the formal and informal health care support networks and the modular structure allowing for comorbidity management, both of which require further implementation.

Dataset Information

A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO.

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A User-Centered Approach to an Evidence-Based Electronic Health Pain Management Intervention for People With Chronic Pain: Design and Development of EPIO.

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