Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies.

BACKGROUND: Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal DHT research is poor. OBJECTIVE: The objective of this paper is to describe how participant engagement techniques and different study designs affect participant adherence, retention, and overall engagement in research involving personal DHTs. METHODS: Quantitative and qualitative analysis of engagement factors are reported across 6 unique personal DHT research studies that adopted aspects of a participant-centric design. Study populations included (1) frontline health care workers; (2) a conception, pregnant, and postpartum population; (3) individuals with Crohn disease; (4) individuals with pancreatic cancer; (5) individuals with central nervous system tumors; and (6) families with a Li-Fraumeni syndrome affected member. All included studies involved the use of a study smartphone app that collected both daily and intermittent passive and active tasks, as well as using multiple wearable devices including smartwatches, smart rings, and smart scales. All studies included a variety of participant-centric engagement strategies centered on working with participants as co-designers and regular check-in phone calls to provide support over study participation. Overall retention, probability of staying in the study, and median adherence to study activities are reported. RESULTS: The median proportion of participants retained in the study across the 6 studies was 77.2% (IQR 72.6%-88%). The probability of staying in the study stayed above 80% for all studies during the first month of study participation and stayed above 50% for the entire active study period across all studies. Median adherence to study activities varied by study population. Severely ill cancer populations and postpartum mothers showed the lowest adherence to personal DHT research tasks, largely the result of physical, mental, and situational barriers. Except for the cancer and postpartum populations, median adherences for the Oura smart ring, Garmin, and Apple smartwatches were over 80% and 90%, respectively. Median adherence to the scheduled check-in calls was high across all but one cohort (50%, IQR 20%-75%: low-engagement cohort). Median adherence to study-related activities in this low-engagement cohort was lower than in all other included studies. CONCLUSIONS: Participant-centric engagement strategies aid in participant retention and maintain good adherence in some populations. Primary barriers to engagement were participant burden (task fatigue and inconvenience), physical, mental, and situational barriers (unable to complete tasks), and low perceived benefit (lack of understanding of the value of personal DHTs). More population-specific tailoring of personal DHT designs is needed so that these new tools can be perceived as personally valuable to the end user.

Beliefs about medication as predictors of medication adherence in a prospective cohort study among persons with multiple sclerosis.

BACKGROUND: Though adherence to disease-modifying therapies (DMTs) among persons with multiple sclerosis (PwMS) varies and is often below 80%, only few prospective studies on adherence examined predictors beyond demographic and clinical characteristics. OBJECTIVES: Identify antecedents to adherence and persistence to DMT in a prospective design among PwMS. METHODS: PwMS (n = 186) were prospectively assessed at three time points: baseline, 6 (Time 1) and 12 months later (Time 2). Clinical, demographic information and patient-reported medication beliefs, illness perceptions, medication habits, perceived health and affect were surveyed in-person. Adherence and persistence were assessed by a combination of self-reports and retrospective review of medication claims. FINDINGS: PwMS were 69.9% (Time 1) and 71% (Time 2) adherent to their DMTs and 64.5.9% were persistent. Beliefs about Medications were consistently predictive at both time points (baseline to Time 1 and Time 1 to Time 2) of medication adherence and persistence whereas other perceptions were predictive in some analyses; clinical and demographic characteristics were mostly not predictive of adherence nor persistence. The prospective association of beliefs about medication with adherence held also in multivariate analyses (OR = 0.88, 95% CI 0.78-0.99, p = 0.029). CONCLUSIONS: Adherence and persistence are predicted by medication beliefs of PwMS. As medication beliefs are modifiable, they should be assessed periodically and targeted as a focus of tailored interventions aimed to improve adherence and consequently health outcomes in PwMS. REGISTRATION: Clinical trials registry # NCT02488343 , date: 06/08/2015.

Rejected Online Feedback From a Swiss Physician Rating Website Between 2008 and 2017: Analysis of 2352 Ratings.

BACKGROUND: Previous research internationally has only analyzed publicly available feedback on physician rating websites (PRWs). However, it appears that many PRWs are not publishing all the feedback they receive. Analysis of this rejected feedback could provide a better understanding of the types of feedback that are currently not published and whether this is appropriate. OBJECTIVE: The aim of this study was to examine (1) the number of patient feedback rejected from the Swiss PRW Medicosearch, (2) the evaluation tendencies of the rejected patient feedback, and (3) the types of issues raised in the rejected narrative comments. METHODS: The Swiss PRW Medicosearch provided all the feedback that had been rejected between September 16, 2008, and September 22, 2017. The feedback were analyzed and classified according to a theoretical categorization framework of physician-, staff-, and practice-related issues. RESULTS: Between September 16, 2008, and September 22, 2017, Medicosearch rejected a total of 2352 patient feedback. The majority of feedback rejected (1754/2352, 74.6%) had narrative comments in the German language. However, 11.9% (279/2352) of the rejected feedback only provided a quantitative rating with no narrative comment. Overall, 25% (588/2352) of the rejected feedback were positive, 18.7% (440/2352) were neutral, and 56% (1316/2352) were negative. The average rating of the rejected feedback was 2.8 (SD 1.4). In total, 44 subcategories addressing the physician (n=20), staff (n=9), and practice (n=15) were identified. In total, 3804 distinct issues were identified within the 44 subcategories of the categorization framework; 75% (2854/3804) of the issues were related to the physician, 6.4% (242/3804) were related to the staff, and 18.6% (708/3804) were related to the practice. Frequently mentioned issues identified from the rejected feedback included (1) satisfaction with treatment (533/1903, 28%); (2) the overall assessment of the physician (392/1903, 20.6%); (3) recommending the physician (345/1903, 18.1%); (4) the physician's communication (261/1903, 13.7%); (5) the physician's caring attitude (220/1903, 11.6%); and (6) the physician's friendliness (203/1903, 10.6%). CONCLUSIONS: It is unclear why the majority of the feedback were rejected. This is problematic and raises concerns that online patient feedback are being inappropriately manipulated. If online patient feedback is going to be collected, there needs to be clear policies and practices about how this is handled. It cannot be left to the whims of PRWs, who may have financial incentives to suppress negative feedback, to decide which feedback is or is not published online. Further research is needed to examine how many PRWs are using criteria for determining which feedback is published or not, what those criteria are, and what measures PRWs are using to address the manipulation of online patient feedback.

A Precision Medicine Tool for Patients With Multiple Sclerosis (the Open MS BioScreen): Human-Centered Design and Development.

BACKGROUND: Patients with multiple sclerosis (MS) face several challenges in accessing clinical tools to help them monitor, understand, and make meaningful decisions about their disease course. The University of California San Francisco MS BioScreen is a web-based precision medicine tool initially designed to be clinician facing. We aimed to design a second, openly available tool, Open MS BioScreen, that would be accessible, understandable, and actionable by people with MS. OBJECTIVE: This study aimed to describe the human-centered design and development approach (inspiration, ideation, and implementation) for creating the Open MS BioScreen platform. METHODS: We planned an iterative and cyclical development process that included stakeholder engagement and iterative feedback from users. Stakeholders included patients with MS along with their caregivers and family members, MS experts, generalist clinicians, industry representatives, and advocacy experts. Users consisted of anyone who wants to track MS measurements over time and access openly available tools for people with MS. Phase I (inspiration) consisted of empathizing with users and defining the problem. We sought to understand the main challenges faced by patients and clinicians and what they would want to see in a web-based app. In phase II (ideation), our multidisciplinary team discussed approaches to capture, display, and make sense of user data. Then, we prototyped a series of mock-ups to solicit feedback from clinicians and people with MS. In phase III (implementation), we incorporated all concepts to test and iterate a minimally viable product. We then gathered feedback through an agile development process. The design and development were cyclical-many times throughout the process, we went back to the drawing board. RESULTS: This human-centered approach generated an openly available, web-based app through which patients with MS, their clinicians, and their caregivers can access the site and create an account. Users can enter information about their MS (basic level as well as more advanced concepts), visualize their data longitudinally, access a series of algorithms designed to empower them to make decisions about their treatments, and enter data from wearable devices to encourage realistic goal setting about their ambulatory activity. Agile development will allow us to continue to incorporate precision medicine tools, as these are validated in the clinical research arena. CONCLUSIONS: After engaging intended users into the iterative human-centered design of the Open MS BioScreen, we will now monitor the adaptation and dissemination of the tool as we expand its functionality and reach. The insights generated from this approach can be applied to the development of a number of self-tracking, self-management, and user engagement tools for patients with chronic conditions.

Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review.

BACKGROUND: Information and communication technology (ICT) has made remarkable progress in recent years and is being increasingly applied to medical research. This technology has the potential to facilitate the active involvement of research participants. Digital platforms that enable participants to be involved in the research process are called participant-centric initiatives (PCIs). Several PCIs have been reported in the literature, but no scoping reviews have been carried out. Moreover, detailed methods and features to aid in developing a clear definition of PCIs have not been sufficiently elucidated to date. OBJECTIVE: The objective of this scoping review is to describe the recent trends in, and features of, PCIs across the United States, the United Kingdom, and Japan. METHODS: We applied a methodology suggested by Levac et al to conduct this scoping review. We searched electronic databases-MEDLINE (Medical Literature Analysis and Retrieval System Online), Embase (Excerpta Medica Database), CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Ichushi-Web-and sources of grey literature, as well as internet search engines-Google and Bing. We hand-searched through key journals and reference lists of the relevant articles. Medical research using ICT was eligible for inclusion if there was a description of the active involvement of the participants. RESULTS: Ultimately, 21 PCIs were identified that have implemented practical methods and modes of various communication activities, such as patient forums and use of social media, in the field of medical research. Various methods of decision making that enable participants to become involved in setting the agenda were also evident. CONCLUSIONS: This scoping review is the first study to analyze the detailed features of PCIs and how they are being implemented. By clarifying the modes and methods of various forms of communication and decision making with patients, this review contributes to a better understanding of patient-centric involvement, which can be facilitated by PCIs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/resprot.7407.

Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto.

Ten years ago, in 2009, "e-Patient Dave" deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research's (JMIR's) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century-with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women's rights movement, with the title of Dave's keynote "Gimme my damn data" becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients' rights to access their data and their right to save their lives.

Barriers and Enablers Affecting Successful Implementation of the Electronic Health Service Sisom: Multicenter Study of Child Participation in Pediatric Care.

BACKGROUND: Children's participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated. OBJECTIVE: The aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals' perspectives. METHODS: A process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents. RESULTS: To our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children's participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals' beliefs in the usefulness and usability of the solution, and health care professionals' willingness to change their professional roles guided by the solution. CONCLUSIONS: The results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children's participation.

Open Access as a Revolution: Knowledge Alters Power.

The slogan "Gimme My Damn Data" has become a hallmark of a patient movement whose goal is to gain access to data in their medical records. Its first conference appearance was ten years ago, in September 2009. In the decade since there have been enormous changes in both the technology and sociology of medicine as well as in their synthesis. As the patient movement has made strides, it has been met with opposition and obstacles. It has also become clear that the availability of Open Access information is just as empowering (or disabling) as access to electronic medical records and device data. Knowledge truly is power, and to withhold knowledge is to disempower patients. This essay lays out many examples of how this shows up as we strive for the best future of care.

The Importance of Health Information on the Internet: How It Saved My Life and How it Can Save Yours.

The internet holds the potential promise of improved patient outcomes, especially when one is faced with a critical or life-threatening disease or condition. Appropriate and timely access to health information can support informed negotiation of optimal treatments, optimal management, and expedited recovery, and to an improved outcome for a patient. However, there are many human and technical barriers that may prevent the application of the best possible information for both patient and provider alike, making the patient journey complex and potentially dangerous. In this viewpoint paper, the author (who is also a JMIR editor) reflects on a personal patient journey, where use of the internet facilitated a means of reaching a good patient outcome in the face of a variety of informational and organizational limitations and gaps. This journey illustrates the importance of human-related factors affecting access to health information. The application of a range of internet information resources at critical points can result in a positive patient outcome, as this case illustrates. This paper reflects on how the experience highlights several information needs and concerns. It also highlights the need for improved access to appropriate health information along the patient journey that can support patient and provider joint decision-making. This access to information can make the difference between positive clinical outcomes and death, illustrating how health information on the internet can be both critical and life saving.

Celebrating 20 Years of Open Access and Innovation at JMIR Publications.

In this 20th anniversary theme issue, we are celebrating how JMIR Publications, an innovative publisher deeply rooted in academia and created by scientists for scientists, pioneered the open access model, is advancing digital health research, is disrupting the scholarly publishing world, and is helping to empower patients. All this has been made possible by the disintermediating power of the internet. And we are not done innovating: Our new series of "superjournals," called JMIRx, will provide a glimpse into what we see as the future and end goal in scholarly publishing: open science. In this model, the vast majority of papers will be published on preprint servers first, with "overlay" journals then competing to peer review and publish peer-reviewed "versions of record" of the best papers.

Building a patient-centered and interprofessional training program with patients, students and care professionals: study protocol of a participatory design and evaluation study.

BACKGROUND: A common approach to enhance patient-centered care is training care professionals. Additional training of patients has been shown to significantly improve patient-centeredness of care. In this participatory design and evaluation study, patient education and medical education will be combined by co-creating a patient-centered and interprofessional training program, wherein patients, students and care professionals learn together to improve patient-centeredness of care. METHODS: In the design phase, scientific literature regarding interventions and effects of student-run patient education will be synthesized in a scoping review. In addition, focus group studies will be performed on the preferences of patients, students, care professionals and education professionals regarding the structure and content of the training program. Subsequently, an intervention plan of the training program will be constructed by combining these building blocks. In the evaluation phase, patients with a chronic disease, that is rheumatoid arthritis, diabetes and hypertension, and patients with an oncologic condition, that is colonic cancer and breast cancer, will learn together with medical students, nursing students and care professionals in training program cycles of three months. Process and effect evaluation will be performed using the plan-do-study-act (PDSA) method to evaluate and optimize the training program in care practice and medical education. A modified control design will be used in PDSA-cycles to ensure that students who act as control will also benefit from participating in the program. DISCUSSION: Our participatory design and evaluation study provides an innovative approach in designing and evaluating an intervention by involving participants in all stages of the design and evaluation process. The approach is expected to enhance the effectiveness of the training program by assessing and meeting participants' needs and preferences. Moreover, by using fast PDSA cycles and a modified control design in evaluating the training program, the training program is expected to be efficiently and rapidly implemented into and adjusted to care practice and medical education.

The patient's voice in the emerging era of participatory medicine.

Professionalism in any field requires keeping pace with change, and nowhere is it more true than medicine. Knowledge flow has changed dramatically since today's accreditation standards were developed, and change continues more rapidly than ever. It's time for a fresh look at how best to achieve care in this altered environment, where valid knowledge may come from the patient as well as from clinician resources: a sociological change driven by technological change. The power structure of the clinical relationship is inevitably altered as constraints on patient knowledge are loosened by the internet, apps, and devices, undermining a paradigm of patients as uninformed recipients of care based on a one-way flow of wisdom from providers. Case after case is presented showing that patients today have generated undeniable value, violating the expectations and assumed best practices of the old model. To understand this sociological (yet scientific) change, this article reviews the role of paradigms in the history of sciences as described in Thomas Kuhn's landmark book The Structure of Scientific Revolutions and describes how these anomalous patient stories force the conclusion that the traditional paradigm of patients is no longer supportable and a new paradigm is needed. This in turn means our standards of professionalism and appropriate care must be updated, lest we fail to achieve best possible care in our increasingly overburdened system. Our new standard must be to teach clinicians to recognize, welcome, and work with empowered "e-patients" in the new model of participatory medicine.

Towards precision medicine; a new biomedical cosmology.

Precision Medicine has become a common label for data-intensive and patient-driven biomedical research. Its intended future is reflected in endeavours such as the Precision Medicine Initiative in the USA. This article addresses the question whether it is possible to discern a new 'medical cosmology' in Precision Medicine, a concept that was developed by Nicholas Jewson to describe comprehensive transformations involving various dimensions of biomedical knowledge and practice, such as vocabularies, the roles of patients and physicians and the conceptualisation of disease. Subsequently, I will elaborate my assessment of the features of Precision Medicine with the help of Michel Foucault, by exploring how precision medicine involves a transformation along three axes: the axis of biomedical knowledge, of biomedical power and of the patient as a self. Patients are encouraged to become the managers of their own health status, while the medical domain is reframed as a data-sharing community, characterised by changing power relationships between providers and patients, producers and consumers. While the emerging Precision Medicine cosmology may surpass existing knowledge frameworks; it obscures previous traditions and reduces research-subjects to mere data. This in turn, means that the individual is both subjected to the neoliberal demand to share personal information, and at the same time has acquired the positive 'right' to become a member of the data-sharing community. The subject has to constantly negotiate the meaning of his or her data, which can either enable self-expression, or function as a commanding Superego.

eHealth for inflammatory bowel disease self-management - the patient perspective.

BACKGROUND: Electronic health (eHealth) solutions may help address the growing pressure on IBD outpatient services as they encompass a component of self-management. However, information regarding patients' attitudes towards the use of eHealth solutions in IBD is lacking. OBJECTIVE: The aim of this study was to evaluate eHealth technology use and explore the perspectives of IBD patients on what constitutes the ideal eHealth solution to facilitate self-management. METHODS: A mixed methods qualitative and quantitative analysis of the outcomes of a discussion forum and an online survey conducted at a tertiary hospital in Melbourne, Australia between November 2015 and January 2016 was undertaken. RESULTS: Eighteen IBD patients and parents participated in the discussion forum. IBD patients expressed interest in eHealth tools that are convenient and improve access to care, communication, disease monitoring and adherence. Eighty six patients with IBD responded to the online survey. A majority of patients owned a mobile phone (98.8%), had access to the internet (97.7%), and felt confident entering data onto a phone or computer (73.3%). Most patients (98.8%) were willing to use at least one form of information and communication technology to help manage their IBD. Smartphone apps and internet websites were the two most preferred technologies to facilitate IBD self-management. CONCLUSIONS: This study demonstrates the willifngness of patients to engage with eHealth as a potential solution to facilitate IBD self-management. Future development and testing of eHealth solutions should be informed by all major stakeholders including patients to maximise their uptake and efficacy to facilitate IBD self-management.

Managing Psychiatrist-Patient Relationships in the Digital Age: a Summary Review of the Impact of Technology-enabled Care on Clinical Processes and Rapport.

PURPOSE OF REVIEW: Participatory medicine and the availability of commercial technologies have given patients more options to view and track their health information and to communicate with their providers. This shift in the clinical process may be of particular importance in mental healthcare where rapport plays a significant role in the therapeutic process. RECENT FINDINGS: In this review, we examined literature related to the impact of technology on the clinical workflow and patient-provider rapport in the mental health field between January 2014 and June 2017. Thirty three relevant articles, of 226 identified articles, were summarized. The use of technology clinically has evolved from making care more accessible and efficient to leveraging technology to improve care, communication, and patient-provider rapport. Evidence exists demonstrating that information and communication technologies may improve care by better connecting patients and providers and by improving patient-provider rapport, although further research is needed.

On status epilepticus and pins: A systematic content analysis.

Status epilepticus (SE) can be defined as abnormally prolonged, persistent, or recurrent clinical and/or electrographic epileptic activity and, as such, is a challenging medical emergency requiring an aggressive treatment aimed at promptly terminating the seizures. It imposes a relevant clinical burden, both in terms of comorbidity and mortality. In the era of the Web 2.0, most people search the Web to obtain SE-related information. The current investigation aimed at qualitatively characterizing the pins related to SE: Pinterest, "the world's catalog of ideas", is a visual social networking site that enables users to freely upload visual material, to bookmark, and to share it (repin). Using SE as a keyword, 192 pins were extracted and analyzed on the basis of their content. Fifty-five were found to meet the inclusion criteria. Fifty-six point four percent of the pins reported at least one cause of SE, the most quoted of which being remote brain injuries (47.3% of the pins); 54.5% and 45.5% of the included pins reported SE symptoms and diagnosis, respectively; 72.7% and 40.0% of pins focused on SE treatment and on prognosis, respectively; and 50.9%, 30.9%, and 40.0% of the pins were intended for physicians, medical/nursing students, and lay people, respectively. Only 12.7% of pins were patient-centered and devoted to fund-raising and advocacy. In the field of neurological diseases, Pinterest, despite being a "pinstructive" tool, is too much overlooked and underused for advocacy purposes. Healthcare workers and stakeholders should be aware of the opportunities offered by Pinterest and exploit this visual social networking site for raising awareness of the life-threatening condition of SE, promoting fund-raising campaigns.

Physiological Informatics: Collection and Analyses of Data from Wearable Sensors and Smartphone for Healthcare.

Physiological data from wearable sensors and smartphone are accumulating rapidly, and this provides us the chance to collect dynamic and personalized information as phenotype to be integrated to genotype for the holistic understanding of complex diseases. This integration can be applied to early prediction and prevention of disease, therefore promoting the shifting of disease care tradition to the healthcare paradigm. In this chapter, we summarize the physiological signals which can be detected by wearable sensors, the sharing of the physiological big data, and the mining methods for the discovery of disease-associated patterns for personalized diagnosis and treatment. We discuss the challenges of physiological informatics about the storage, the standardization, the analyses, and the applications of the physiological data from the wearable sensors and smartphone. At last, we present our perspectives on the models for disentangling the complex relationship between early disease prediction and the mining of physiological phenotype data.

Personalized Intervention to Improve Medication Adherence for Persons with Multiple Sclerosis.

Purpose: To evaluate the acceptability, retention, and efficacy of face-to-face intervention, incorporating education and Motivational Interviewing (MI) to support persons with relapsing-remitting multiple sclerosis (PwRRMS) and increase self-reported medication adherence. Patients and Methods: PwRRMS (N = 60) prescribed Disease Modifying Treatment (DMT), who were identified as non-adherent and consented to participate in an intervention, received verbal education and counseling from their treating physician, a tailored MI counseling and a booster session via telephone with a health psychologist, and a concluding MI counseling six months later. Each PwRRMS filled a battery of patient-reported outcomes (PROs) at baseline, six and 12 months later. The design was a quasi-experimental pre-test post-test across a year. Results: Of the sixty identified persons who consented to enroll, 52 completed the intervention and 46 completed the follow-up. At six months following the baseline, adherence scores increased (median = 12.0) and were significantly different than at baseline (median=10.0, p = 0.030). Still, at 12 months follow-up there was no significant difference from baseline in reported adherence (median = 11.0, p = 0.106). Conclusion: This study demonstrated reasonable retention and initial efficacy of a combined psycho-education and MI protocol for PwRRMS to enhance medication adherence to DMT. To maintain the change, a more sustained intervention is required.

The study focused on persons with relapsing-remitting multiple sclerosis (PwRRMS) who do not adhere to their prescribed medication. Following the identification of non-adherent persons, PwRRMS were offered an intervention to increase their adherence. The study examined how many of those identified consented to enroll in the intervention, how many remained in the intervention, and whether the intervention was efficacious in terms of self-reported adherence. The intervention included verbal education and counseling from the treating physician, immediately followed by tailored counseling by a psychologist. There was a booster session via telephone with the psychologist, and a concluding counseling meeting six months later. Participants were followed for a year after the initial counseling. Two-thirds of PWMS identified as non-adherent consented to enroll (n = 60), 52 completed the intervention and 46 completed the follow-up. At six months following counseling, self-reported adherence scores significantly increased, but at 12 months follow-up there was no significant difference from baseline in reported adherence. To maintain the change, a more sustained intervention is required.

A Participatory Model for Cocreating Accessible Rehabilitation Technology for Stroke Survivors: User-Centered Design Approach.

Background: Globally, 1 in 3 people live with health conditions that could be improved with rehabilitation. Ideally, this is provided by trained professionals delivering evidence-based dose, intensity, and content of rehabilitation for optimal recovery. The widely acknowledged inability of global health care providers to deliver recommended levels of rehabilitation creates an opportunity for technological innovation. Design processes that lack close consideration of users' needs and budgets, however, mean that many rehabilitation technologies are neither useful nor used. To address this problem, our multidisciplinary research group have established a cocreation center for rehabilitation technology that places the end user at the center of the innovation process. Objective: This study aims to present the participatory cocreation model that has been developed from our center and illustrate the approach with 2 cases studies. Methods: The model is built around user participation in an intensive rehabilitation program (2-hour sessions, 2-5 times per week, and 8-week duration), supervised by qualified therapists but delivered exclusively through commercial and prototype technology. This provides participants (chronic stroke survivors with movement and/or speech disability) with a rich experience of rehabilitation technology, enabling them to provide truly informed feedback, as well as creating an observatory for the research team. This process is supported by short-term focus groups for specific product development and a longer-term advisory group to consider broader issues of adoption and translation into everyday health care. Results: Our model has been active for 3 years with 92 (92%) out of 100 participants completing the program. Five new technologies have evolved from the process with further ideas logged for future development. In addition, it has led to a set of cocreated protocols for technology-enriched rehabilitation, including recruitment, outcome measures, and intervention structure, which has allowed us to replicate this approach in an acute hospital ward. Conclusions: Suboptimal rehabilitation limits recovery from health conditions. Technology offers the potential support to increase access to recommended levels of rehabilitation but needs to be designed to suit end users and not just their impairment. Our cocreation model, built around participation in an intensive, technology-based program, has produced new accessible technology and demonstrated the feasibility of our overall approach to providing the rehabilitation that people need, for as long as needed.

Using a Designathon to Develop an HIV Self-Testing Intervention to Improve Linkage to Care Among Youths in Nigeria: Qualitative Approach Based on a Participatory Research Action Framework.

BACKGROUND: UNAIDS (Joint United Nations Programme on HIV and AIDS) and the Nigeria National HIV/AIDS Strategic Framework recommend HIV self-testing and youth-friendly services to enhance HIV testing, linkage to health services, and prevention. However, the voices of youths are seldom incorporated into interventions. We examined qualitative data generated from a series of participatory events in partnership with Nigerian youths focused on enhancing linkage to care. OBJECTIVE: The aim of this study was to assess youth-initiated interventions developed during a designathon to improve linkage to care and sexually transmitted infection services. METHODS: This study conducted a designathon informed by crowdsourcing principles and the participatory research action framework. A designathon is a multistage process including an open call, a sprint event, and follow-up activities. The open call solicited Nigerian youths (14-24 years old) to develop intervention strategies for linkage to care and youth-friendly health services. A total of 79 entries were received; from this, a subset of 13 teams responded to the open call and was invited to participate in a sprint event over 72 hours. Narratives from the open-call proposals were analyzed using grounded theory to identify emergent themes focused on youth-proposed interventions for linkage to care and youth-friendly services. RESULTS: A total of 79 entries (through the web=26; offline=53) were submitted. Women or girls submitted 40 of the 79 (51%) submissions. The average age of participants was 17 (SD 2.7) years, and 64 of 79 (81%) participants had secondary education or less. Two main themes highlighted strategies for enhancing youths' HIV linkage to care: digital interventions and collaboration with youth influencers. A total of 76 participants suggested digital interventions that would facilitate anonymous web-based counseling, text prompt referrals, and related services. In addition, 16 participants noted that collaboration with youth influencers would be useful. This could involve working in partnership with celebrities, gatekeepers, or others who have a large youth audience to enhance the promotion of messages on HIV self-testing and linkage. The facilitators of youths' linkage included health facility restructuring, dedicated space for youths, youth-trained staff, youth-friendly amenities, and subsidized fees. Barriers to HIV linkage to care among youths included a lack of privacy at clinics and concerns about the potential for breaching confidentiality. CONCLUSIONS: Our data suggest specific strategies that may be useful for enhancing HIV linkage to care for Nigerian youths, but further research is needed to assess the feasibility and implementation of these strategies. Designathons are an effective way to generate ideas from youths.