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UNSTRUCTURED The Nordic countries are forerunners in online record access (ORA) which has now become widespread. The importance of accessible and structured health data has also been highlighted by policymakers internationally. To ensure the full realization of ORA’spotential in the short and long term, there is a pressing need to study ORA from a cross-disciplinary, technical, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European Union, and introduce a Nordic-led research project that carries out the first of its kind, large-scale international investigation of patients’ ORA; NORDeHEALTH. We argue that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records (EHRs). This will have implications within Europe and globally as it will further extend the boundaries for accessing and using EHRs for primary and secondary data use. Research such as that led by the NORDeHEALTH project is essential in guiding the design and implementation of solutions to meet the requirements of the EHDS proposal. Further international collaboration and research are needed to ensure that socio-technical and contextual factors are considered to ensure successful and secure implementation.

BACKGROUND While a large number of surveys have been conducted on patients accessing their own health records in recent years, there is a limited number 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 To investigate the socio-demographic characteristics and experiences of patients who access their electronic health records (EHRs) through the national patient portals in Norway, Sweden, Finland, and Estonia. METHODS A cross-sectional web-based survey via national online health portals. Target participants were patients that accessed the national patient portals at the start of 2022, and were aged 15 years and above. The survey included a mixture of close-ended and free-text questions about participant socio-demographics, usability, experiences with healthcare and the EHR, reasons for reading health records online, experience with errors, omissions and offence, opinions about security and privacy, as well as the usefulness of portal functions. Here, we summarised data on participant demographics, past experience with healthcare and the patient portal through descriptive statistics. RESULTS 29,334 users completed the survey, of which 9,503 (32.40%) portal users were from Norway, 13,008 (44.35%) from Sweden, 4,713 (16.07%) from Finland and 2,104 (7.17%) from Estonia. National samples were comparable according to reported gender, with two-thirds identifying as women. Age distributions were similar across the countries, but Finland had more older users while Estonia had more younger. The highest attained education and presence of healthcare education varied between the national samples. In all four countries, patients most commonly rated their health as ‘fair’ (38.48%). In Estonia, participants were more often inclined to rate their health positively, while Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, the majority of patients received some care in the last two years (86.55%). Mental healthcare was more common (21.24%) than oncological (12.52%). Overall, the majority of patients had accessed their health record ‘2 to 9 times’ (39.40%), with the most frequent users residing in Sweden, where one-third of patients accessed it ‘more than 20 times’ (35.14%). CONCLUSIONS This is the first large-scale international survey to compare patient users’ socio-demographics and experiences with accessing their EHRs. While 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 investigating patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined datasets from the NORDeHEALTH 2022 Patient Survey. CLINICALTRIAL Not applicable.

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 shows 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.

BackgroundAwareness of patients’ innovative capabilities is increasing, but there is limited knowledge regarding the extent and nature of patient-driven innovations in the peer-reviewed literature.ObjectivesThe objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-reviewed scientific journals?Eligibility criteriaWe used a broad definition of innovation to allow for a comprehensive review of different types of innovations and a narrow definition of ‘patient driven’ to focus on the role of patients and/or family caregivers. The search was limited to years 2008–2020.Sources of evidenceFour electronic databases (Medline (Ovid), Web of Science Core Collection, PsycINFO (Ovid) and Cinahl (Ebsco)) were searched in December 2020 for publications describing patient-driven innovations and complemented with snowball strategies.Charting methodsData from the included articles were extracted and categorised inductively.ResultsA total of 96 articles on 20 patient-driven innovations were included. The number of publications increased over time, with 69% of the articles published between 2016 and 2020. Author affiliations were exclusively in high income countries with 56% of first authors in North America and 36% in European countries. Among the 20 innovations reported, ‘Do-It-Yourself Artificial Pancreas System‘ and the online health network ‘PatientsLikeMe’, were the subject of half of the articles.ConclusionsPeer-reviewed publications on patient-driven innovations are increasing and we see an important opportunity for researchers and clinicians to support patient innovators’ research while being mindful of taking over the work of the innovators themselves.

Levodopa-induced dyskinesia (LID) represents a significant source of discomfort for people with Parkinson's disease (PD). It negatively affects quality of life, it is associated with both motor and nonmotor fluctuations, and it brings an increased risk of disability, balance problems, and falls. Although the prevalence of severe LID appears to be lower than in previous eras (likely owing to a more conservative use of oral levodopa), we have not yet found a way to prevent the development of this complication. Advanced surgical therapies, such as deep brain stimulation, ameliorate LID, but only a minority of PD patients qualify for these interventions. Although some have argued that PD patients would rather be ON with dyskinesia than OFF, the deeper truth is that patients would very much prefer to be ON without dyskinesia. As researchers and clinicians, we should aspire to make that goal a reality. To this end, translational research on LID is to be encouraged and persistently pursued. © 2019 International Parkinson and Movement Disorder Society.

Contains fulltext : 209024.pdf (Publisher’s version ) (Open Access) 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 practical workshop 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.

Contains fulltext : 244228.pdf (Publisher’s version ) (Open Access) Using Parkinson's disease as an exemplary chronic condition, this Commentary discusses ethical aspects of using self-tracking for personal science, as compared to using self-tracking in the context of conducting clinical research on groups of study participants. Conventional group-based clinical research aims to find generalisable answers to clinical or public health questions. The aim of personal science is different: to find meaningful answers that matter first and foremost to an individual with a particular health challenge. In the case of personal science, the researcher and the participant are one and the same, which means that specific ethical issues may arise, such as the need to protect the participant against self-harm. To allow patient-led research in the form of personal science in the Parkinson field to evolve further, the development of a specific ethical framework for self-tracking for personal science is needed.

Today, patients are using the internet and other technologies as well as fellow patients to diagnose their own problems, find the best treatment, continually optimise their treatments, and even fund and conduct research.1 They are doing this not thanks to, but despite, healthcare. The impression is that many clinicians would rather patients didn’t use Google for healthcare, and patients are keen not to annoy the people whose help we need. Of course, patients with chronic or long term conditions can become experts in their illness, but patients who show clinical knowledge sometimes experience disbelief or even active opposition from professionals. Work by The BMJ ’s former patient editor Rosamund Snow showed how people with type 1 diabetes and high health literacy were hindered by healthcare professionals who were not experts in the specialty.2 What should the new healthcare look like? We don’t know for sure, but 17 years ago, Tom Ferguson, a health informatics professor, argued that physicians and other healthcare professionals should embrace the efforts of active patients.3 He said that granting patients’ wishes for more online communication with their doctors could reduce consultation times. He coined the term ‘e-patients’ to mean patients (or their friends or relatives) who seek health related information online,4 which results in ‘better health information and services, and different (but not always better) relationships with their doctors.’5 ### How I became an e-patient I was 32 when I had Parkinson’s disease diagnosed in June 2003, but I had known that something was wrong for almost 18 years. I experienced the first symptoms in my teens, and a few years later was diagnosed as having generalised dystonia. I researched this diagnosis for hours in the library in the suburb of Stockholm where I grew …

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

Phenotype is the set of observable traits of an organism or condition. While advances in genetics, imaging, and molecular biology have improved our understanding of the underlying biology of Parkinson's disease (PD), clinical pheno-typing of PD still relies primarily on history and physical examination. These subjective, episodic, categorical assessments are valuable for diagnosis and care but have left gaps in our understanding of the PD phenotype. Sensors can provide objective, continuous, real-world data about the PD clinical phenotype, increase our knowledge of its pathology, enhance evaluation of therapies, and ultimately, improve patient care. In this paper, we explore the concept of deep phenotyping-the comprehensive assessment of a condition using multiple clinical, biological, genetic, imaging, and sensor-based tools-for PD. We discuss the rationale for, outline current approaches to, identify benefits and limitations of, and consider future directions for deep clinical phenotyping.

Patients’ contributions to biomedical research have quickly been shifting from passive participant to active contributor. But what happens when the person with lived experience of the disease becomes the clinical researcher?

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 circumstances.

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 circumstances.

At a recent BMJ Editor’s retreat, as formal proceedings ended and the dinner began, a late arrival and the need to squeeze in one more seat at the table resulted in the new direction you see, with the launch of a Patient Editorial Board. Following wide ranging discussions about patient involvement across all aspects of clinical research, a commitment was made to address ways to improve patient engagement in the studies that we publish. Establishment of an Editorial Board comprised solely of patients to help guide the journal, is part of a growing trend for greater consumer involvement across all walks of life in an attempt to refine and drive more meaningful exchanges and outcomes. Of relevance to neurology practice, a number of patient support groups have reacted to a perceived lack of progress in relation to discovery of new treatments and investigation of rare neurological diseases. To date, rare diseases seem to have been left in the wake of the more prominent conditions. This has become increasingly apparent in the realm of neurodegenerative disease where patient groups have broadly questioned the direction of research. Specifically, questions have arisen about the suitability of clinical trial models particularly for conditions where there is significant heterogeneity, even if …

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.

Objective:To determine whether providing remote neurologic care into the homes of people with Parkinson disease (PD) is feasible, beneficial, and valuable.Methods:In a 1-year randomized controlled trial, we compared usual care to usual care supplemented by 4 virtual visits via video conferencing from a remote specialist into patients' homes. Primary outcome measures were feasibility, as measured by the proportion who completed at least one virtual visit and the proportion of virtual visits completed on time; and efficacy, as measured by the change in the Parkinson's Disease Questionnaire–39, a quality of life scale. Secondary outcomes included quality of care, caregiver burden, and time and travel savings.Results:A total of 927 individuals indicated interest, 210 were enrolled, and 195 were randomized. Participants had recently seen a specialist (73%) and were largely college-educated (73%) and white (96%). Ninety-five (98% of the intervention group) completed at least one virtual visit, and 91% of 388 virtual visits were completed. Quality of life did not improve in those receiving virtual house calls (0.3 points worse on a 100-point scale; 95% confidence interval [CI] −2.0 to 2.7 points; p = 0.78) nor did quality of care or caregiver burden. Each virtual house call saved patients a median of 88 minutes (95% CI 70–120; p < 0.0001) and 38 miles per visit (95% CI 36–56; p < 0.0001).Conclusions:Providing remote neurologic care directly into the homes of people with PD was feasible and was neither more nor less efficacious than usual in-person care. Virtual house calls generated great interest and provided substantial convenience.ClinicalTrials.gov identifier:NCT02038959.Classification of evidence:This study provides Class III evidence that for patients with PD, virtual house calls from a neurologist are feasible and do not significantly change quality of life compared to in-person visits. The study is rated Class III because it was not possible to mask patients to visit type.

SummaryBackground: New insights and knowledge in biomedical science often come from observation and experimentation. Methods traditionally used include self-experimentation, case reports, randomised controlled trials, and N-of-1 studies. Technological advances have lead to an increasing number of individuals and patients engaging in self-tracking. We use the term patient-driven N-of-1 for self-tracking performed with the explicit intention to disseminate the results by academic publishing.Objectives: The aim of the study was to: 1) explore the potential role for patient-driven N-of-1 studies as a tool for improving self-management in Parkinson’s disease (PD) using the example of managing levodopa-induced dyskinesia (LID) with nicotine, and 2) based on this example; identify some specific challenges of patient-driven N-of-1 studies.Methods: We used a placebo controlled patient-driven N-of-1 study with nicotine administered via e-cigarette to treat LID. The first author initiated and conducted the experiment on herself and noted her observations. The evaluations of the potential of N-of-1 for improving self-management of PD as well as the effects of nicotine on dyskinesia were based on the perception of the subject. During the planning and undertaking of the experiment, notes were made to identify challenges specific to patient-driven N-of-1 studies.Results: The subject was able to distinguish a decrease of her LID from nicotine but no effect from placebo. The main challenges of patient-driven N-of-1 studies were identified to be associated with planning of the study, recruiting a suitable research team, making sure the data collection is optimal, analysis of data, and publication of results.Conclusions: Our study indicates that nicotine administered via e-cigarette may have an effect on levodopa-induced dyskinesia in individual patients with PD. The main contribution is however highlighting the work done by patients on a daily basis for understanding their conditions and conducting self-tracking experiments. More work is needed to further develop methods around patient-driven N-of-1 studies for PD.

Background: Delivering specialty care remotely directly into people's homes can enhance access for and improve the healthcare of individuals with chronic conditions. However, evidence supporting this approach is limited. Materials and Methods: Connect.Parkinson is a randomized comparative effectiveness study that compares usual care of individuals with Parkinson's disease in the community with usual care augmented by virtual house calls with a Parkinson's disease specialist from 1 of 18 centers nationally. Individuals in the intervention arm receive four virtual visits from a Parkinson's disease specialist over 1 year via secure, Web-based videoconferencing directly into their homes. All study activities, including recruitment, enrollment, and assessments, are conducted remotely. Here we report on interest, feasibility, and barriers to enrollment in this ongoing study. Results: During recruitment, 11,734 individuals visited the study's Web site, and 927 unique individuals submitted electronic interest forms. Two hundred ten individuals from 18 states enrolled in the study from March 2014 to June 2015, and 195 were randomized. Most participants were white (96%) and college educated (73%). Of the randomized participants, 73% had seen a Parkinson's disease specialist within the previous year. Conclusions: Among individuals with Parkinson's disease, national interest in receiving remote specialty care directly into the home is high. Remote enrollment in this care model is feasible but is likely affected by differential access to the Internet.

We should make direct access easy when the benefits outweigh the risks Healthcare systems worldwide face unprecedented challenges over the coming years as populations grow older and sicker. There is only one sustainable solution: more active patients. Current calls for patients to have direct access to physiotherapists and to other allied health professionals such as radiographers in the NHS, without a referral from a GP, have the potential to lead to improvements for a lot of patients. As a patient with Parkinson’s disease I strongly support the idea of easier access to physiotherapists, because it’s well established that physiotherapy is essential for our wellbeing.1 With the right help we can preserve our stamina, agility, and …

BACKGROUND There is a growing interest in the objective assessment of health related outcomes using technology providing quality measurements to be applied not only in daily clinical practice, but also in scientific research. Differences in the understandings of the condition and the terminology used between people with Parkinson's (PwPs), clinicians and technical developers may influence the progress of a participatory design process. OBJECTIVE This paper reports on a participatory design process to achieve a consensus among PwPs, clinicians and technologists over the selection of a set of symptomatic domains to be continuously assessed, in order to provide results relevant to both PwPs and clinicians. METHODS The methods used were a Web based user survey, end-user focus groups, ranking by combined methods, a Delphi process performed among clinicians and scientists, and prioritization of the results in a concertation workshop for PwPs, clinicians and technologists. RESULTS The following symptomatic domains were commonly agreed by PwPs and clinicians to be of central importance in a system of continuous assessment: hypokinesia/bradykinesia, tremor, sway, gait, sleep and cognition. This list satisfied both the needs of the PwPs and the concerns of the clinicians regarding the means of advancing new strategies in assessment and interventions in PD. CONCLUSIONS A participatory design strategy allowed the definition of a consensual list of symptomatic domains. Both the strategy and the achieved results may be of relevance for similar interdisciplinary approaches in the field of PD using a participatory design involving patients, clinicians and technologists.

Background Interest in improving care for the growing number of individuals with chronic conditions is rising. However, access to care is limited by distance, disability, and distribution of doctors. Small-scale studies in Parkinson disease, a prototypical chronic condition, have suggested that delivering care using video house calls is feasible, offers similar clinical outcomes to in-person care, and reduces travel burden. Methods/Design We are conducting a randomized comparative effectiveness study (Connect.Parkinson) comparing usual care in the community to usual care augmented by virtual house calls with a Parkinson disease specialist. Recruitment is completed centrally using online advertisements and emails and by contacting physicians, support groups, and allied health professionals. Efforts target areas with a high proportion of individuals not receiving care from neurologists. Approximately 200 individuals with Parkinson disease and their care partners will be enrolled at 20 centers throughout the United States and followed for one year. Participants receive educational materials, then are randomized in a 1:1 ratio to continue their usual care (control arm) or usual care and specialty care delivered virtually (intervention arm). Care partners are surveyed about their time and travel burden and their perceived caregiver burden. Participants are evaluated via electronic survey forms and videoconferencing with a blinded independent rater at baseline and at 12 months. All study activities are completed remotely. The primary outcomes are: (1) feasibility, as measured by the proportion of visits completed, and (2) quality of life, as measured by the 39-item Parkinson’s Disease Questionnaire. Secondary outcomes include measures of clinical benefit, quality of care, time and travel burden, and caregiver burden. Discussion Connect.Parkinson will evaluate the feasibility and effectiveness of using technology to deliver care into the homes of individuals with Parkinson disease. The trial may serve as a model for increasing access and delivering patient-centered care at home for individuals with chronic conditions. Trial registration This trial was registered on clinicaltrials.gov on January 8, 2014 [NCT02038959]. Electronic supplementary material The online version of this article (doi:10.1186/1745-6215-15-465) contains supplementary material, which is available to authorized users.

Two patients explain the work they do to reduce their disease burden Patients with complex chronic conditions face not only the biological burden of the disease itself but also the burden of treatment, which might be defined as “work that patients do to care for their health, problem focused strategies to facilitate self care, and factors that exacerbate the felt burden.”1 The burden of treatment is exacerbated because patients must align with institutional work processes that have been designed around institutional operations and clinicians’ needs. Sometimes patients have to reorganise and retrain clinicians to receive the high quality healthcare that is in our best interests.2 We both have Parkinson’s disease and experience a complex array of motor and non-motor symptoms. Here is a glimpse at the invisible work that, in our experience, leads to better care. Many complex medical conditions are best …