Background: Self-management after a stroke is a challenge because of multifaceted care needs and complex disabling consequences that cause further hindrance to patient participation. A 13-week stroke patient empowerment intervention (Health Empowerment Intervention for Stroke Self-management [HEISS]) was developed to enhance patients' ability to participate in self-management. Purpose: To examine the effects of the empowerment intervention on stroke patients' self-efficacy, self-management behavior, and functional recovery. Methods: This is a single-blind randomized controlled trial with stroke survivors assigned to either a control group (CG) receiving usual ambulatory rehabilitation care or the HEISS in addition to usual care (intervention group [IG]). Outcome data were collected at baseline (T0), 1 week (T1), 3 months (T2), and 6 months (T3) postintervention. Data were analyzed on the intention-to-treat principle. The generalized estimating equation model was used to assess the differential change of self-efficacy in illness management, self-management behaviors (cognitive symptom management, communication with physician, medication adherence, and self-blood pressure monitoring), and functional recovery (Barthel and Lawton indices) across time points (baseline = T0, 1 week = T1, 3 months = T2, and 6 months = T3 postintervention) between the two groups. Results: A total of 210 (CG = 105, IG = 105) Hong Kong Chinese stroke survivors (mean age =69 years, 49% women, 72% ischemic stroke, 89% hemiparesis, and 63% tactile sensory deficit) were enrolled in the study. Those in IG reported better self-efficacy in illness management 3-month (P=0.011) and 6-month (P=0.012) postintervention, along with better self-management behaviors at all follow-up time points (all P<0.05), apart from medication adherence (P>0.05). Those in IG had significantly better functional recovery (Barthel, all P, 0.05; Lawton, all P<0.001), compared to CG. The overall dropout rate was 16.7%. Conclusion: Patient empowerment intervention (HEISS) may influence self-efficacy in illness management and improve self-management behavior and functional recovery of stroke survivors. Furthermore, the HEISS can be conducted in parallel with existing ambulatory stroke rehabilitation services and provide added value in sustaining stroke self-management and functional improvement in the long term.

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In November 2012 Uppsala County Council (UCC) introduced an eHealth service, ‘My Health Record’, that gives all inhabitants over age 18 in Uppsala County access to their health records online. However, this service has not been evaluated before this study. We conducted an interview study, based on User Experience (UX) and Patient empowerment, with users of ‘My Health Record’ to get their opinions, and to see if and how the service can be improved. Our findings shows that the users are positive to the service and the aspects that can be improved mostly concern information and communication. Based on these results, we propose design principles as well as concrete design proposals which can be useful for re-designing the service as well as inspiration for similar projects. Additionally, an interesting finding is that the interviewees had very few opinions and complains on the actual interface, which could mean that the content (the health record) is so interesting that the interface becomes almost “invisible”. A conclusion we make is that UX and Patient empowerment is a good fit for each other, and that UX has advantages over traditional usability in services like this.

Syftet med föreliggande studie var att beskriva vad personer med diabetes anser inverka på deras möjlighet och vilja att följa egenvårdsråd (patientperspektivet) och att beskriva omvård-nad som stöder följsamhet (sjukvårdsperspektivet). Studien har genomförts som en litteratur-studie. Det visade sig att alla krav för att hålla sjukdomen under kontroll innebär livsstilsför-ändringar, som kan vara så utmanande för patienten, att han kanske inte kan eller vill vidta dessa. Bristande kunskap om sjukdomen och om dess egenvårdskrav kan göra honom dåligt emotionellt anpassad till denna, det vill säga han har inte accepterat att han har sjukdomen och han vill inte låta dess egenvårdskrav inkräkta på det sociala livet. Detta ger honom för-sämrade möjligheter att hantera sjukdomen på ett bra sätt. Barriärer av olika slag kan uppstå mellan patient och vårdgivare. Det kan röra sig om en upplevd brist på information och stöd när diabetes diagnosticerats eller en känsla av att vara utsatt för läkarens eller sjuksköterskans stereotypa föreställningar och/eller att bli paternalistiskt behandlad. Till barriärer räknas även klinisk misskötsel, det vill säga att läkare/sjuksköterska inte följer vedertagna riktlinjer för be-handling.Vad som kan inverka positivt på följsamheten är patientens stöd av anhöriga eller andra i det sociala nätverket. Omvårdnad som stöder följsamhet visade sig varapatientundervisning, främst om den inriktades på att öka patientens självständighet genom att låta undervisningen pågå under en längre tid, så att patienten hinner integrera sin nya kunskap med det dagliga livet. Med eller utan patientundervisning tar det tid att bygga upp ett socialt stöd och ett förtroende mellan patient och vårdare.

In recent years, many Personal Health Record (PHR) systems have been developed to retrieve patients&rsquo / Electonic Health Records (EHRs) from external sources. However, current PHRs can provide access to only a small number of EHR systems, since there are many dierent interfaces, data formats and medical terminologies among dierent systems. When this is the case, all these diversity yields high integration costs. Development of such systems is dicult and expensive because of the reasons such as accessing to evidence based medical information, utilization of social networks to share information, incorporation of available medical knowledge models, etc. Due to the technical diversity of external information systems, a developer of a PHR system faces a dicult integration process when he wants to integrate a new source or service. Integration of medical devices is also important and necessary in a PHR system. However, most of the medical device vendors use proprietary formats and protocols for communicating their devices with external systems / again, causing high integration eorts and costs. In this thesis, these problems and challenges are addressed by providing an on-line personal iv healthcare management platform, i.e. eSaglikKaydim which is built on top of a highly modular architecture and provides services based on worldwide standards. In this way, eSaglikKaydim platform can be integrated with any external health information service and medical device so that it maximizes the data variety retrieved from all kinds of external health data sources. The work presented in this thesis is part of the OSAmI project supported by European ITEA and funded by the TU&uml / BI

No / Worldwide healthcare systems are facing immense changes in the demand of care with vast cost explosions caused by aging populations and the increase in chronic and mental diseases. The move towards patient-centered healthcare seems to be an ideal approach to meet future challenges but still clashes with reality. Patient Advice and Liaison Service (PALS) in the UK is one of the unique examples of patient empowerment to influence changes in healthcare systems like the National Health Service (NHS). The purpose of this paper is to look at user-driven organizational change management in PALS in retrospect to learn from its ‘best’ and ‘worst’ practices. In conclusion, patient-centered healthcare becomes more realistic if healthcare users and workers are empowered at the same time. The vision of patient, public, and staff involvement in the move towards patient-centered health needs to be backed up by adequate and secure resources as well as consistent organizational leadership and change management. Organizational change processes in general should be seen as biological continuous cycles with unpredictable evolutionary turning points rather than linear progressions. This helps to stay optimistic and embrace change as challenging, exciting, and difficult all the way through the change process.

Background - Patients as active partners in their personal healthcare are key drivers to reducing costs, securing an effective usage of resources, and ensuring patient-provider satisfaction. Even though these benefits are acknowledged, a theoretical framework for the plethora of concepts used in this context, such as patient engagement, patient empowerment, or patient involvement is missing. Furthermore, the heterogeneous or synonymous usage of these terms leads to miscommunication, missing standard conceptual measures, and a deficiency in theory building and testing. Our objective is to show what the relationships and distinctions between concepts focussing on patients as active partners in their personal healthcare are. - Methods - systematic literature review was conducted to consolidate terms related to patients’ having an active role in their healthcare. From 442 articles screened in PubMed, a final set of 17 papers was included. Any articles conceptualising or presenting relationships between the concepts were included. Information was synthesised, and contradictions were unravelled systematically. The concepts and their relationships are structured and represented by employing a concept map. - Results - Patient-centredness is a concept dominantly influenced by health care providers and can enhance patients’ competencies, attitudes, and behaviours towards their personal healthcare. Enabling patients to become more empowered can ultimately lead to their greater involvement and engagement. Fostering an active role of patients can also increase their adherence to the care pathway. In general, patient engagement seems to be the most conclusive and furthest developed concept in terms of turning patients into active partners in their personal healthcare. - Conclusions We plead for a stricter demarcation and therefore a terminological standardisation of the terms in the future to avoid further ambiguity and miscommunication. The concept map presents a basis for a uniform understanding and application of the concepts. Through a comprehensive understanding of the terms and their dimensions, relationships between the concepts can be utilised, measures can be derived, and theory building and testing can be enhanced, leading to better acceptance and utilisation of concepts in healthcare services. Furthermore, patient engagement is presented to be the most conclusive and furthest developed concept in the subject area.

This thesis adds to a stream of research suggesting that healthcare can be more patient centered and efficient by redefining the role of the patient from a passive receiver to a more active and collaborative participant. This may relate to healthcare provision (Anderson and Funnell, 2005; Berry and Bendapudi, 2007; Bitner and Brown, 2008; McColl-Kennedy et al., 2012; Nordgren, 2008) and innovation (Bate and Robert, 2006; Groene et al., 2009; Longtin et al., 2010). Through research initiative containing four healthcare units and 68 patients, the present thesis combines healthcare research (e.g., Anderson and Funnell, 2005; Nelson et al., 2002) with service research (e.g., Grönroos, 2006; Vargo and Lusch, 2008, 2004) to explore three aspects of patient involvement and service innovation. Firstly, the concept of patient involvement itself is investigated through an extensive literature review of empirical research on patient involvement. A model describing the antecedents, forms and consequences of patient involvement is proposed. What value is, and how patients can co-create value is discussed from the perspectives of healthcare research and service management thought. Secondly, the thesis proposes a diary-based methodology for involving patients in service innovation. My colleagues and I developed the methodology in collaboration with the participating care providers and applied it in practice. We used the experiences we gained from the project and the contributions from the patients to examine the opportunities for user involvement in service innovation. The participants contributed with ideas and insights stemming from their experiences in their contact with healthcare and other resources. We suggest the following three ways of learning from the collected data: As ideas for improvements; through summary reports to illustrate other quantitative data; and as narratives to promote change. Thirdly, the thesis explores patients’ motivations to participate in service innovation, a hitherto unexplored field. Through an analysis of patients’ contributions and interviews with participants we found that there are a number of factors that motivate patients to participate and that participation is perceived as a social- and meaningladen event. Patients derive psychological well-being and support from participation, but disease was sometimes a barrier to participation. This thesis elaborates on how the most motivated users can be involved in service innovation, applying thinking from the lead-user methodology to a healthcare setting. Overall, the thesis explores patient involvement from new perspectives and, by doing so, adds to our collective efforts to improve healthcare. / Denna avhandling syftar till en mer patientcentrerad och effektiv sjukvård. Den bidrar till en strömning inom forskningen som menar att sjukvården kan förbättras genom en omdefiniering av patientrollen – från en roll som passiv mottagare till aktiv, samskapande aktör. Patienten kan ses som en resurs både i utförande av vården (Anderson and Funnell, 2005; Berry and Bendapudi, 2007; Bitner and Brown, 2008; McColl-Kennedy et al., 2012; Nordgren, 2008) och inom utveckling och innovation (Bate and Robert, 2006; Groene et al., 2009; Longtin et al., 2010). Avhandlingen kombinerar sjukvårdsforskning (Anderson and Funnell, 2005; Nelson et al., 2002) med tjänsteforskning (Grönroos, 2006; Vargo and Lusch, 2008, 2004) i en forskningsansats som innefattar fyra vårdenheter och 68 patienter. Den utforskar tre aspekter av patientinvolvering och tjänsteinnovation. För det första undersöks konceptet patientinvolvering genom en omfattande litteraturöversikt av den empiriska forskningen på området. Översikten leder till en konceptuell modell för att beskriva patientinvolvering: vad dess förutsättningar är, vilka former av patientinvolvering som finns och vad patientinvolvering leder till. Avhandlingen diskuterar även begreppet värde och hur patienter kan samskapa värde, utifrån perspektiv inom vårdforskning och tjänsteforskning. För det andra föreslår avhandlingen en dagboksbaserad metod för att involvera patienter i tjänsteinnovation. Deltagande patienter skriver i denna metod ner sina ner sina idéer och upplevelser varje dag under två veckors tid. Mina kollegor och jag utvecklade metoden i samarbete med personal från de deltagande vårdenheterna och applicerade den på praktiken. Erfarenheterna från projektet och de deltagande patienternas bidrag användes för att utforska möjligheterna med patientinvolvering i utvecklingen av vården. Vi föreslår tre sätt att lära sig från det insamlade materialet: som direkta idéer till förbättringar; summerat till rapporter för att ge kvalitativ förståelse av andra kvantitativa mätningar; och enskilda patienters berättelser kan användas för att förmedla patientperspektivet i organisationen och mana till förändring. För det tredje undersöker avhandlingen patienters motivation att bidra till tjänsteinnovation, ett hittills outforskat område. Genom en analys av patienters bidrag och genom intervjuer med deltagare finner vi att patienter motiveras att delta av en rad olika anledningar, från ett behov av upprättelse till en glädje av att utföra aktiviteten. Deltagandet uppfattas som en social och meningsfull händelse. Patienter upplever psykiskt välbefinnande och stöd genom att delta, även om sjukdom kan vara ett hinder i deltagandet. Avhandlingen undersöker även hur de allra mest motiverade patienterna kan identifieras och inkluderas i tjänsteinnovation, detta inspirerat av lead  user-metoden (von Hippel, 1986). Sammantaget utforskar avhandlingen patientinvolvering och tjänsteinnovation från nya perspektiv och bidrar därmed till våra gemensamma ansträngningar för att förbättra vården och patienters välbefinnande.

That people should take responsibility for their health is a prominent contemporary idea. But what does such responsibility actually entail, and what demands are being put on people? The objective of the dissertation is to describe and critically examine various ideas on personal responsibility for health. In the first step, I identify and describe a wide variation of uses of responsibility and in the second step, I problematize them. The analyzed material consists of Swedish government reports and various types of health advice literature, including medical books and alternative medicine literature. I employ a framework of philosophical, social scientific, and developmental psychology theories on responsibility to critically examine the material. The study shows that taking responsibility involves both body and mind. Common ideas are that it requires maintaining a healthy lifestyle and managing one's self-care. But it is also considered important to take responsibility for beliefs and emotions and to adopt an accepting attitude. Another idea is that spiritual insights expand the scope of responsibility. Some important abilities required to take responsibility are conscious healthy choices, self-knowledge, and critical thinking. The view of responsibility is also influenced by individual factors, cultural beliefs about health and disease, and social structures. In the literature, health responsibility is regarded both as a social duty and as a never-ending task performed by an active individual. Finally, I use Robert Kegan's theory of adult development to show that taking responsibility imposes psychological demands on people's awareness. The demands are often higher than many people can manage. Some of the stress and poor health that people experience may be the product of an inability to manage all of life's demands. The developmental perspective also asserts that people can develop the requisite capacity. One conceivable conclusion of the study is that if we want people to take more responsibility, we should not only invest resources in health information, but also in measures that generate self-knowledge, reflection, and personal development.

To address emerging challenges in empowering patients through telehealth, this dissertation has the following objectives: (a) find the key characteristics that enable patient empowerment [PE], (b) determining when will PE work as a solution, (c) find the optimal telehealth care method that enables PE, and (d) evaluate the impact of telehealth on health care outcomes (such as, patient satisfaction, patient trust with primary care providers, etc.) that ultimately enhances PE. These objectives are addressed in three studies presented here as three essays. Collectively, these essays contribute to the knowledge on PE, patient trust, and telehealth by providing insights on leveraging PE towards better health care services and delivery systems. Essay 1 aims to systemically map the concept of PE using principles of systems thinking with the Boardman soft systems methodology that enables a graphical visualization (i.e., systemigrams). Essay 2 investigates the practical and theoretical implications of connecting patients to empowerment care plans and minimizing wait times in healthcare service delivery using electronic prescriptions (s-scripts), phone calls, and video calls. In Essay 3, the mediating role of telehealth services between patient empowerment and patient satisfaction was analyzed, along with patient trust was assessed as a moderator between telehealth usability and patient satisfaction. Two hundred sixty-two responses from patients in North America with chronic illnesses were collected through an online survey questionnaire were analyzed using partial least squares-structural equation modeling (PLS-SEM). The findings of the research show that patients with chronic illnesses in North America feel empowered by using telehealth as they can get diagnosis of the illness even in remote areas and face no obstacle.