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The Influence of Disease and Context on Patient Participation in Healthcare Service Development
Linköping University, Department of Management and Engineering, Business Administration. Linköping University, Faculty of Arts and Sciences.
Linköping University, Department of Management and Engineering, Quality Technology and Management. Linköping University, The Institute of Technology.
Linköping University, Department of Management and Engineering, Quality Technology and Management. Linköping University, HELIX Vinn Excellence Centre. Linköping University, The Institute of Technology.
Linköping University, Department of Management and Engineering, Quality Technology and Management. Linköping University, HELIX Vinn Excellence Centre. Linköping University, The Institute of Technology.
2013 (English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: The experience that patients have gained from their own care and disease makes them a potentially valuable resource in healthcare service development. While service developers in other domains frequently involve users, this practice remains uncommon in healthcare. An initial step for increasing patient participation in healthcare service development is to determine which patients to involve and how. This study aims to clarify the various roles a patient may have in healthcare service development and examine how type of disease (episodic/chronic) and context (home/care provider) influence what forms of patient participation are suitable in healthcare service development.

Methods: Fifty-three patients participated in a healthcare service development project in which patients submitted ideas and reflections in diaries. From the diaries, we identified 360 ideas that we coded according to their types, characteristics and sources. We used logistic regression to investigate how the characteristics and sources of the ideas depended on the type of disease and context of the patients.

Results: Patients’ ideas concerned a large variety of topics and depended on context and disease. Patients were better at identifying solutions in the home than at the care provider (p<0.01). In terms of the patient’s role in executing ideas, there were differences regarding context (p<0.01) and an interaction effect between context and type of disease (p<0.01). Chronic patients mostly suggested ideas for themselves. Negative experiences were important to the generation of ideas, with differences regarding both the type of disease (p<0.01) and the context (p<0.01). Chronic patients’ ideas often stemmed from negative incidents; for episodic patients at home, from positive events. There were differences regarding the idea’s appearance for type of disease (p<0.01); for chronic patients ideas emerged from continuous problems, for episodic patients from new situations.

Conclusions: Based on the type of disease (episodic/chronic) and context (home/care provider), we have identified four different roles that a patient can have in healthcare service development: feedback provider, problem solver, co-developer, and expert. We suggest different methods for patient participation in healthcare service development for each role. By doing so, this article helps care provider’s select appropriate methods to support patient participation in healthcare service development.

Place, publisher, year, edition, pages
2013.
Keyword [en]
Patient participation; healthcare service development; patient centred care, diaries
National Category
Engineering and Technology
Identifiers
URN: urn:nbn:se:liu:diva-105928OAI: oai:DiVA.org:liu-105928DiVA: diva2:712298
Conference
HELIX Conference, Innovative Practices in Work, Organisation and Regional Development - Problems and Prospects, June 12-14, Linköping, Sweden
Available from: 2014-04-14 Created: 2014-04-14 Last updated: 2014-05-19Bibliographically approved
In thesis
1. Patient Involvement: A Service Perspective
Open this publication in new window or tab >>Patient Involvement: A Service Perspective
2014 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

For a long time, patients were seen as weak and passive recipients of care, whose only role was to provide information and comply with doctors’ orders. This is beginning to change, and patients are more seen as autonomous, active, and involved collaborators in care, co-creating value with service providers and others. In parallel, the healthcare sector is changing due to an aging population, advances in technology, medical knowhow, and the prevalence of chronic diseases, which all call for a more involved patient. During the last decade, patient involvement in healthcare has been recognized as important to provide more efficient, integrated, patient-focused healthcare. Despite this recent gain in attention, there is a gap between rhetoric’s and practice, since the meaning and benefits of patient involvement are unclear both in theory and practice. This thesis takes an alternate perspective on patient involvement, departing from service theory on value creation and customer involvement. It aims to understand and explore patient involvement and how patients can be involved in both the use, and development, of healthcare services.

This thesis is based on three different studies using both qualitative and quantitative research methods. The first study is a systematic literature review of healthcare research, addressing the topic of patient involvement and related concepts. Based on a total of 125 reviewed empirical articles, this study serves as an introduction and orientation to the diverse field. It aims to contribute to the knowledge base in the growing research field of patient involvement. The second study addresses and explores lead-user theory as a method to identify highly innovative patients who can be suitable for involvement in healthcare development. The third study explores how patients, depending on disease, care process and context, can take different roles in healthcare development.

The results indicate that patient involvement is not an isolated activity but influences the whole healthcare system. This extends the view of patient involvement from just decision-making and isolated encounters to patients potentially being substantially involved in all aspects of healthcare. This is also important in involvement in use. The patient’s individual experiences, context, and type of illness play an important role in development initiatives. Patients should be selected carefully, for involvement in healthcare development, depending on the goal of the initiative. The type of illness and the patient’s context are key factors to the kind of contributions patients can make. Depending on the type of illness, and if it shows up mostly at home or at the care provider’s, patients develop different contributions.

This thesis contributes to understanding patient involvement by taking a service perspective on co-creation and customer involvement. This approach to patient involvement extends the traditional view by proposing that patients should be involved in all stages of healthcare. Understanding how individuals create value and manage their health is important for individuals, healthcare providers, and government. Much of  a patient’s value creation takes place outside the patientprovider sphere, and is therefore unknown to the healthcare provider. By actively involving patients in both use and development, healthcare providers can apply a whole-person perceptive.

Abstract [sv]

Förutsättningarna för vården har förändrats under de senaste decennierna. Anledningar till dessa förändringar utgörs av bland annat en åldrande befolkning, teknisk och medicinsk utveckling och en ökad förekomst av kroniska sjukdomar. Traditionellt har patienter setts som passiva mottagare av vård, vars roll endast varit att svara på frågor samt följa läkarens ordination av behandling. På senare tid har detta dock börjat förändras. Patienter börjar att i högre grad ses som självständiga, engagerade och deltagande i vården. Enligt detta nya betraktningssätt kan patienter bidra aktivt till värdeskapande, tillsammans med vårdpersonal och andra resurser. Under det senaste decenniet har patientinvolvering setts som en allt viktigare del för att kunna leverera en mer effektiv, integrerad och patientfokuserad vård.

Trots detta ökande intresse, finns det en skillnad mellan retorik och praktik. Patientinvolvering och fördelarna med patientinvolvering är oklara både i teori och praktik – bland forskare, sjukvårdspersonal och patienter. Denna licentiatsavhandling utgår från ett tjänsteperspektiv på patientinvolvering och syftar till att förstå och undersöka hur patienter kan vara involverade i användandet och utvecklingen av vården.

Avhandlingen bygger på tre olika studier med både kvalitativa och  kvantitativa forskningsmetoder. Resultaten av studierna tyder på att patientinvolvering inte är en isolerad process utan istället kan ses som något som påverkar alla delar av sjukvården. Detta utökar synen på vad patientinvolvering kan vara. Istället för att se patientinvolvering som kopplat till att patienten ger information och är involverad i beslutsfattande, kan patienten vara involverad i alla aspekter av sjukvården, både i själva utförandet och utvecklingen. Men det är också viktigt att patientens individuella erfarenheter och preferenser, sammanhang och sjukdomsbild spelar en stor roll för hur mycket och vilken typ av involvering som är lämplig. Vid patientinvolvering i utvecklingen av vården, bör patienter väljas noggrant beroende på mål med utvecklingen och vilken typ av involvering det rör sig om. Även sammanhang och typ av sjukdom är viktiga faktorer för vilken typ av bidrag som kan förväntas av patienter. Beroende på typ av sjukdom och kontext, kan patienter förväntas bidra på olika sätt.

Denna avhandling bidrar till en ökad förståelse för patienters involvering i vården genom att ta utgångspunkt ur ett tjänsteperspektiv men fokus på värdeskapande och patienters engagemang. Detta förhållningsätt till patientinvolvering utökar den traditionella synen på involvering genom att föreslå att patienter ska vara involverade i alla steg och aktiviteter i vården. Mycket av patientens värdeskapande sker utanför vården, i den privata sfären, och är därför dolt för vårdgivaren. Att förstå hur patienter skapar värde och sköter sin hälsa är grundläggande för att kunna förbättra vården och stödja patientens egna ansträngningar. Genom att aktivt involvera patienter både i den egna vården men även i utvecklingen av vården i stort är det möjligt att gemensamt skapa en bättre vård.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2014. 55 p.
Series
Linköping Studies in Science and Technology. Thesis, ISSN 0280-7971 ; 1651
National Category
Engineering and Technology
Identifiers
urn:nbn:se:liu:diva-105930 (URN)10.3384/lic.diva-105930 (DOI)978-91-7519-371-7 (ISBN)
Presentation
2014-04-25, ACAS, A-huset, Campus Valla, Linköpings universitet, Linköping, 13:15 (English)
Opponent
Supervisors
Available from: 2014-04-14 Created: 2014-04-14 Last updated: 2014-05-27Bibliographically approved
2. Patient involvement and service innovation in healthcare
Open this publication in new window or tab >>Patient involvement and service innovation in healthcare
2014 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Abstract [sv]

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.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2014. 91 p.
Series
Linköping Studies in Science and Technology. Dissertations, ISSN 0345-7524 ; 1604
Keyword
Patient Involvement, participation, co-creation, patient empowerment, user involvement. patient centered care, motivation, user experiences, co-creation, service development, service innovation, service design, health care, lead users, diary, value
National Category
Engineering and Technology
Identifiers
urn:nbn:se:liu:diva-106661 (URN)10.3384/diss.diva-106661 (DOI)978-91-7519-304-5 (ISBN)
Public defence
2014-05-28, A-cas, A-huset, Campus Valla, Linköpings universitet, Linköping, 13:15 (English)
Opponent
Supervisors
Available from: 2014-05-19 Created: 2014-05-19 Last updated: 2014-06-17Bibliographically approved

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Witell, LarsEngström, JonElg, MattiasSnyder, Hannah

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