"You have to know why you're doing this" : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD. Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking. Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare. Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.FORTE, the Swedish Research Council for Health, Working Life and Welfare, grant number 2014-4238Vinnova, the Swedish Governmental Agency for Innovation SystemsPublishe

Meeting the burden of self-management : qualitative study investigating the empowering behaviors of patients and informal caregivers

Background: Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective: We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods: We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews. Results: A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals. Conclusions: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective.Vinnova, the Swedish Governmental Agency for Innovation Systems (grant 2017-01221)Forte, the Swedish Research Council for Health, Working Life and Welfare (grant 2016-07324 and grant 2018-01472)Publishe

From information seekers to innovators : qualitative analysis describing experiences of the second generation of e-patients

Background: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative. Objective: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care. Methods: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset. Results: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them. Conclusions: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstancesVinnova, the Swedish Governmental Agency for Innovation Systems (grant number 2017-01221)Publishe

Implementation of a community-based exercise program for Parkinson patients: using boxing as an example

Background: Persons with Parkinson’s disease (PD) benefit from continuous exercise through participation in community-based exercise programs. However, community programs often lack PD-specific knowledge needed to provide safe and adequately dosed exercise.Objective: To evaluate the acceptability and safety of a PD-specific boxing program in the community.Methods:We developed specific educational resources to facilitate the boxing instructors.We also organized an educational and practicalworkshop for patients (n = 26) and instructors (n = 10), and assessed: (a) participants’ satisfaction; (b) instructors’ appreciation of the educational resources; and (c) numbers of patients interested in participating in the boxing program. After 18 months, patients and instructors completed a questionnaire evaluating: (a) participants’ satisfaction; (b) adverse events; (c) facilitators and barriers; and (d) proportion of participants at follow-up.Results: Twenty-six persons with PD (62% men) and 10 boxing instructors participated in the workshop. 81% of patients and 80% of instructors were very satisfied. Instructors found the educational materials “very helpful” (60%) or “helpful” (40%). Patients expressed a clear interest (54%) or possible interest (46%) in the program.We initiated classes with 10 participants. At 18-months follow-up, the program consisted of four boxing sessions/week, led by three instructors, with 40 participants. Seventeen patients responded to the questionnaire at follow-up. Participants were “very satisfied” (53%), “satisfied” (35%) and neither satisfied nor unsatisfied (12%) with the program. Adverse effects were mild (e.g., muscle aches). Transportation and physical disability were the main barriers for participation.Conclusions: The boxing program was well-received, with increasing numbers of participants at 18 months. The educational resources can support boxing instructors participating in current and future boxing classes being delivered in the community.info:eu-repo/semantics/publishedVersio

The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia

Background: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients’ views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. Objective: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. Methods: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. Results: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as “fair” (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record “2 to 9 times” (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it “more than 20 times” (4571/13,008, 35.14%). Conclusions: This is the first large-scale international survey to compare patient users’ sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients’ experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey

Precision Medicine in Parkinson's Disease - : Exploring Patient-Initiated Self-Tracking

BACKGROUND: Individually tailored healthcare, in the form of precision medicine, holds substantial potential for the future of medicine, especially for a complex disorder like Parkinson's disease (PD). Patient self-tracking is an under-researched area in PD. OBJECTIVE: This study aimed to explore patient-initiated self-tracking in PD and discuss it in the context of precision medicine. METHODS: The first author used a smartphone app to capture finger-tapping data and also noted times for medication intakes. RESULTS: Data were collected during four subsequent days. Only data from the first two days were complete enough to analyze, leading to the realization that the collection of data over a period of time can pose a significant burden to patients. From the first two days of data, a dip in finger function was observed around the time for the second medication dose of the day. CONCLUSIONS: Patient-initiated self-tracking enabled the first author to glean important insights about how her PD symptoms varied over the course of the day. Symptom tracking holds great potential in precision medicine and can, if shared in a clinical encounter, contribute to the learning of both patient and clinician. More work is needed to develop this field and extra focus needs to be given to balancing the burden of tracking for the patient against any expected benefit

A Long Way to Go : Patient Perspectives on Digital Health for Parkinson's Disease

Digital health promises to improve healthcare, health, and wellness through the use of digital technologies. The purpose of this commentary is to review and discuss the field of digital health for Parkinson's disease (PD) focusing on the needs, expectations, and wishes of people with PD (PwP). Our analysis show that PwP want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm

Patient advocates respond to 'Utilizing Patient Advocates…' by Feeney et al

Correction in: Health Expectations, 2020, vol. 23, no. 4, page 976</p

“You have to know why you're doing this” : a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease

Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD. Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking. Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare. Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.Spetspatiente