Sara Riggare

Uppsala University | UU · Department of Women's and Children's Health

Loss-of-function variants in the PRKN gene encoding the ubiquitin E3 ligase PARKIN cause autosomal recessive early-onset Parkinson s disease (PD). Extensive in vitro and in vivo studies have reported that PARKIN is involved in multiple pathways of mitochondrial quality control, including mitochondrial degradation and biogenesis. However, these find...

Background: Partnership research practices involving various stakeholder groups are gaining ground. Yet, the research community is still exploring how to effectively coproduce research together. This study describes (a) key programme developments in the creation of a 6-year partnership research programme in Sweden, and (b) explores the hopes, expec...

Objectives The aim of this study was to gain a deeper understanding of the objectives and outcomes of patient-driven innovations that have been published in the scientific literature, focusing on (A) the unmet needs that patient-driven innovations address and (B) the outcomes for patients and healthcare that have been reported. Methods We performe...

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...

Background More knowledge is needed regarding the perceptions of healthcare professionals when encountering empowered patients and informal caregivers in clinical settings. This study aimed to investigate healthcare professionals’ attitudes towards and experiences of working with empowered patients and informal caregivers, and perception of workpla...

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....

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...

Objectives Patient lead users can be defined as patients or relatives who use their knowledge and experience to improve their own or a relative’s care situation and/or the healthcare system, and who are active beyond what is usually expected. The objective of this study is to explore patient lead users’ experiences and engagement during the early C...

Parkinson’s disease (PD) is an incurable and complex neurodegenerative condition with highly individualised manifestations and an extremely fluctuating nature. Persons with PD must manage their complicated treatment mostly without support from the healthcare system, which means that effective selfcare is incredibly important. Improvements in selfca...

Background Awareness 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. Objectives The objective of the review was to answer the question: what is the nature and extent of patient-driven innovations published in peer-revie...

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 clinic...

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 technolo...

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?

In the absence of international standards, widely differing attitudes and laws, medical and social cultures strongly influence whether and how patients may access their medical records in various settings of care. Reviewing records, including the notes clinicians write, can help shape how people participate in their own care. Aided at times by new...

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 phenotyping of PD still relies primarily on history and physical examination. These subjective, episodic, categorical assess...

Background: Parkinson's disease (PD) is often associated with psychological distress and lowered daily functioning. The availability of psychological interventions tailored for people with Parkinson is very limited. Objective: To study if guided individually-tailored internet-based cognitive behavioral therapy (ICBT) provide additional value to...

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 l...

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...

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 othe...

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 find...

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 th...

BACKGROUND The first generation of e-patients were equipped, empowered, enabled, and engaged patients and informal caregivers, who used the Internet for finding information or for communication, to solve a personal need. There is however a lack of knowledge about e-patients’ driving forces for engaging in their own health and care. This knowledge c...

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 findi...

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 is important to consider that the goal of digital health is to improve the experience of the patient as they traverse the health care system and to ultimately improve their health outcomes. In today’s fully connected and digitally integrated world, patients, not providers are the rising stars in digital health innovation. Working from their own...

Background: 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...

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....

Effective self-management is key to living well with Parkinson’s disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson’s disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson’s disease–related healthcare. Data were collected through an online survey, which had 346 re...

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 individua...

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...

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 exa...

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), clinic...

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,...

e-Learning is essentially the computer and network-enabled transfer of skills and knowledge. e-Health is a term for healthcare practice supported by electronic processes and communication. Parkinson’s Disease Summer School is a multidisciplinary project. One of the objectives of the School is to use innovative and interactive methods of education f...