Understanding Co-Creation in a Research Partnership Programme Exploring Patient-Driven Innovations: A Qualitative Longitudinal Study.

BACKGROUND: Research indicates that successful co-creation depends on a shared understanding of co-creation and its related concepts. However, it also shows that, in practice, views on co-creation and how to do it differ. This study aims to explore how patient innovators and researchers in a partnership research programme understand co-creation and how this understanding changes over time. METHODS: An explorative longitudinal qualitative study was conducted with the 'Patients in the Driver's Seat' partnership research programme. Fifty-eight interviews were performed and analysed using a reflexive thematic approach. FINDINGS: Four different ways of understanding co-creation were identified. These can be instrumentally conceptualized as themes using the inputs-process-outputs model: (1) combining different perspectives, experiences and backgrounds (inputs); (2) deliberately dynamic and exploratory (process); (3) striving for equity, not equality (process); and (4) diverse value creation, tangible and intangible (outputs). Together, these themes represent the varied understandings of co-creation among partnership programme members. CONCLUSIONS: Our study of patient innovators and researchers identified four distinct yet complementary understandings of co-creation. The study suggests that co-creation is the sum of its essential components, which can be divided into inputs, process, and outputs. PATIENT OR PUBLIC CONTRIBUTION: This study, and the partnership programme it explored, aims to improve the relevance of research for patients and informal caregivers through an improved understanding of the concept of co-creation within research on patient innovation. All patient innovators involved in the programme were invited, as interviewees and researchers, to contribute to the study design and data analysis.

Why publish? An interview study exploring patient innovators' reasons for and experiences of scientific publishing.

BACKGROUND: Scientific publications featuring patient-driven innovations (i.e., innovations that are developed and driven by patients or informal caregivers) are increasing. By understanding patient innovators' experiences of research publication, the scientific community may be better prepared to support or partner with patient innovators. Thus, the aim of this study was to explore patient innovators' reasons for and experiences of authoring scientific publications about their innovations. METHODS: Qualitative semi-structured interviews were conducted with 15 international patient innovators from three continents who had published in scientific journals. Participants were identified through a scoping review on patient-driven innovations and snowball sampling. Interviews were conducted from June to October 2022 and the data was analyzed using the Framework Method. FINDINGS: Participants' reasons for publishing in scientific journals were to strengthen the roles and voices of patients and informal caregivers, and to get recognition for their innovations. Some published as a response to serendipitous opportunities. Several positive experiences were reported: collaborations defined by transparency, mutual respect, and meaningful participation; learning and competence development; and gained confidence regarding the value of lived experiences in research. Participants also reported negative experiences, such as cultural barriers manifested as conservatism in academia and power imbalances between participants and researchers, and structural barriers regarding academic affiliations and research funding. CONCLUSIONS: Despite progress in increasing patient and public involvement in research and publication, our study found that patient innovators still experience barriers. This suggests that continued efforts are needed to facilitate contributions from patient innovators and other public actors to the production of relevant and meaningful research.

Rapid technological advances over the past decades have resulted in many health innovations that enable persons living with chronic conditions to better manage their health conditions in self-care. Similarly, caregivers can provide more advanced informal care. Do-it-yourself health innovations, such as automatic insulin dosing for diabetes patients, have been developed by patients and informal caregivers whom we in this study defined as patient innovators. There is an increasing trend of research focusing on such patient-driven innovations. However, we know little about the driving forces of patient innovators to contribute to scientific publications about their innovations. Therefore, the aim of this study was to explore patient innovators' reasons for publishing and their experiences thereof. We interviewed 15 international patient innovators who had experience of scientific publishing. Their main driving forces were to make patients' voices heard and receive recognition for their innovations, which could facilitate spread to other patients. The patient innovators in our study had positive experiences and meaningful collaborations with researchers that contributed to developing their scientific skills. However, they also faced challenges, such as managing their health and professional occupations besides research, being questioned by peer reviewers, and difficulties tackling the research and publication system without academic affiliation or funding. Our findings suggest that despite strong driving forces and positive experiences of scientific publishing, patient innovators face barriers that need to be addressed to facilitate the publication process for contributors without academic experience.

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.

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, expectations, and experiences of patient innovators (i.e., individuals with lived experience as patients or caregivers who drive health innovations) and researchers involved in the programme during the first years. METHODS: We conducted a prospective longitudinal qualitative study spanning the first 2 years of the programme. Data consisted of meeting protocols and interviews with 14 researchers and 6 patient innovators; 39 interviews were carried out in three evenly-spaced rounds. We identified significant events and discussion themes in the meeting protocols and analyzed the interviews using thematic analysis, applying a cross-sectional recurrent approach to track changes over time. FINDINGS: Meeting protocols revealed how several partnership practices (e.g., programme management team, task forces, role description document) were cocreated, supporting the sharing of power and responsibilities among programme members. Based on the analysis of interviews, we created three themes: (1) paving the path to a better tomorrow, reflecting programme members' high expectations; (2) going on a road trip together, reflecting experiences of finding new roles and learning how to cocreate; (3) finding the tempo: from talking to doing, reflecting experiences of managing challenges and becoming productive as a team. CONCLUSIONS: Our findings suggest that sharing, respecting, and acknowledging each other's experiences and concerns helps build mutual trust and shape partnership practices. High expectations beyond research productivity suggest that we need to consider outcomes at different levels, from the individual to society, when evaluating the impact of partnership research. PATIENT OR PUBLIC CONTRIBUTION: The research team included members with formal experiences as researchers and members with lived experiences of being a patient or informal caregiver. One patient innovator coauthored this paper and contributed to all aspects of the research, including the design of the study; production of data (as interviewee); interpretation of findings; and drafting the manuscript.

Patient lead users experience of the COVID-19 pandemic: a qualitative interview study.

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 COVID-19 pandemic. DESIGN: Qualitative in-depth interviews with a cross-sectional time horizon. SETTING: The early COVID-19 pandemic in Sweden, from 1 June through 14 September, 2020. PARTICIPANTS: A total of 10 patient lead users were recruited from the Swedish patient lead users (spetspatient) network. All participants were living with different long-term conditions and matched the definition of being patient lead users. RESULTS: We found that during the early pandemic, patient lead users experienced that they no longer knew how to best manage their own health and care situations. On an individual level, they described an initial lack of knowledge, new routines, including a change in their health and an experience of people without a disease being in the same situation as them, for a while. On a systemic level, they described a fear of imminent unmet-care backlogs and decreased opportunities for sharing patient perspectives in care organisation, but also described increased networking. CONCLUSIONS: Patient lead users can be seen as an emerging community of practice, and as such could be a valuable resource as a complementary communication channel for an improved health system. The health systems were not able to fully acknowledge and engage with the resource of patient lead users during the pandemic.

Patient-driven innovations reported in peer-reviewed journals: a scoping review.

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-reviewed scientific journals? ELIGIBILITY CRITERIA: We 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 EVIDENCE: Four 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 METHODS: Data from the included articles were extracted and categorised inductively. RESULTS: A 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. CONCLUSIONS: Peer-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.

Impact of Abdominal Aortic Calcification on Central Haemodynamics and Decline of Glomerular Filtration Rate in Patients with Chronic Kidney Disease Stages 3 and 4.

BACKGROUND/AIM: Calcifications of large arteries are frequent in chronic kidney disease (CKD) and may contribute to the high cardiovascular risk in this population. The aim of this study was to examine whether abdominal aortic calcification volume (AACV) was a predictor of the rate of decline in glomerular filtration rate (GFR) in a cohort of patients with CKD stages 3 and 4. METHODS: Eighty-four patients with CKD stages 3 and 4 were enrolled in this prospective observational study. At study entry, and annually, GFR was measured by plasma 51Cr-EDTA clearance. At baseline, haemodynamics was assessed and AACV was determined by computer tomography. RESULTS: The mean follow-up time was 3.4 years and mean decline in GFR was -2.69 mL/min/1.73 m2 per year. At baseline, abdominal aortic calcification (AAC) was detected in 66 patients (79%). A binary logistic regression analysis revealed that age was the only statistically significant independent predictor of AAC. In patients with AAC, male gender (B = 0.413, p = 0.030), aortic diastolic blood pressure (B = -0.025, p = 0.001) and ankle-brachial index (B = -1.666, p = 0.002) were independently associated with AACV using a multiple linear regression analysis. Neither the presence nor the extent of AAC was significantly associated with the rate of change in GFR during follow-up. CONCLUSION: In this cohort of patients with CKD stages 3 and 4, only age was an independent predictor of the presence of AAC. AACV was not associated with the rate of decline in GFR.

Evaluation of mitochondrial DNA coding region assays for increased discrimination in forensic analysis.

There is an increasing trend to use mitochondrial DNA (mtDNA) analysis in criminal investigations where only limited amounts of DNA are available. However, analysis of the mtDNA control region has the drawback of low discrimination power, due to the lack of recombination that results from uniparental (maternal) inheritance. As a strategy to increase discrimination, a number of typing assays detecting variation in the mitochondrial coding region have been developed. In this study, several of these assays are evaluated for their discriminatory capacity using data obtained from 495 complete Caucasian mtDNA sequences. In order to add a local geographic perspective to this evaluation, we have also sequenced and analysed the entire mtDNA from 20 individuals of Swedish origin. We find that the coding region assays are very useful for resolving sequences with identical HVI/HVII regions. The best-performing coding region assay was able to discriminate 46% of the resolvable sequences, compared to 20-30% for the other coding region assays we evaluated.

Competitive inhibition of electron donation to photosystem 1 by metal-substituted plastocyanin.

The electron transfer from wild-type spinach plastocyanin (Pc) to photosystem 1 has been studied by flash-induced absorption changes at 830 nm. The decay kinetics of photo-oxidized P700 are drastically slower in the presence of Ag(I)-substituted Pc, while addition of Zn(II)-substituted Pc has a weaker effect. The metal-substituted forms of Pc act as competitive inhibitors of the reaction between normal, Cu-containing, Pc and P700. The inhibition constants obtained from an analysis of the kinetic data were 30 and 410 microM for Ag(I)- and Zn(II)-substituted Pc, respectively. When the Gly8Asp mutant form of Pc was used instead of the wild-type form, the corresponding values were found to be 77 and 442 microM. If the Ag- and Zn-derivatives can be considered as structural mimics of reduced and oxidized CuPc, respectively, our results imply that there is a redox-induced decrease in the affinity between Pc and photosystem 1 that follows the electron donation to P700. Our data also imply that the Gly8Asp mutation can diminish the magnitude of this change. The findings reported here are consistent with a reaction mechanism where the electron transfer in the complex between Pc and photosystem 1 is assumed to be reversible.

The crystal structure of the spinach plastocyanin double mutant G8D/L12E gives insight into its low reactivity towards photosystem 1 and cytochrome f.

Plastocyanin (Pc) is a copper-containing protein, which functions as an electron carrier between the cytochrome b(6)f and photosystem 1 (PS1) complexes in the photosynthetic electron transfer (ET) chain. The ET is mediated by His87 situated in the hydrophobic surface in the north region of Pc. Also situated in this region is Leu12, which mutated to other amino acids severely disturbs the ET from cytochrome f and to PS1, indicating the importance of the hydrophobic surface. The crystal structure of the Pc double mutant G8D/L12E has been determined to 2.0 A resolution, with a crystallographic R-factor of 18.3% (R(free)=23.2%). A comparison with the wild-type structure reveals that structural differences are limited to the sites of the mutations. In particular, there is a small but significant change in the hydrophobic surface close to His87. Evidently, this leads to a mismatch in the reactive complex with the redox partners. For PS1 this results in a 20 times weaker binding and an eightfold slower ET as determined by kinetic measurements. The mutations that have been introduced do not affect the optical absorption spectrum. However, there is a small change in the EPR spectrum, which can be related to changes in the copper coordination geometry.