scholarly journals Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e044289
Author(s):  
Cláudia de Freitas ◽  
Mariana Amorim ◽  
Helena Machado ◽  
Elisa Leão Teles ◽  
Maria João Baptista ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Rare Diseases ◽  
Patient Involvement ◽  
Healthcare Services ◽  
Health Data ◽  
Mixed Methods Study ◽  
University Hospital ◽  
Data Governance ◽  
The Public ◽  
Public And Patient Involvement

IntroductionInternational policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research.Methods and analysisThis multidisciplinary project draws on an explanatory sequential mixed-methods study. A hospital-based survey with patients, informal carers, health professionals and technical staff recruited at two reference centres for rare diseases in Portugal will be conducted first. The qualitative study will follow consisting of semi-structured interviews and scenario-based workshops with a subsample of the participant groups recruited at baseline. Quantitative data will be analysed using descriptive and inferential statistics. Inductive and deductive approaches will be combined to analyse the qualitative interviews. Data from scenario-based workshops will be iteratively compared using the constant comparison method to identify cross-cutting themes and categories.Ethics and disseminationThe Ethics Committee for Health from the University Hospital Centre São João/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.

scholarly journals Assessing burden, risk factors, and perceived impact of uterine fibroids on women’s lives in rural Haiti: implications for advancing a health equity agenda, a mixed methods study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Christophe Millien ◽  
Anatole Manzi ◽  
Arlene M. Katz ◽  
Hannah Gilbert ◽  
Mary C. Smith Fawzi ◽  
...  
Keyword(s):  
Risk Factors ◽  
Mixed Methods ◽  
Black Women ◽  
Uterine Fibroids ◽  
Mixed Methods Study ◽  
University Hospital ◽  
Gynecologic Surgery ◽  
Cross Sectional ◽  
Women's Lives

Abstract Background Uterine fibroids, the most common cause of gynecologic surgery, have a reported cumulative incidence of 59% among Black women in the U.S. Uterine fibroids negatively impact the quality of women’s lives. No study has been found in the literature about fibroids in Haiti. We conducted a mixed methods study to assess the burden and risk factors of uterine fibroids, as well as their effects on women’s quality of life. Methods A convergent mixed methods study was conducted between October 1, 2019 and January 31, 2020 at MUH’s (Mirebalais University Hospital) OB-GYN outpatient department. Quantitatively, in a cross-sectional study 211 women completed consecutively a structured questionnaire. In-depth interviews with 17 women with fibroids and 7 family members were implemented for the qualitative component. Descriptive statistics were calculated for clinical and social demographic variables. Logistic regression was performed to examine associations between fibroids and related risk factors. An inductive thematic process was used to analyze the qualitative data. A joint display technique was used to integrate the results. Results Of 193 women analyzed 116 had fibroids (60.1%). The mean age was 41.3. Anemia was the most frequent complication— 61 (52.6%). Compared to women without uterine fibroids, factors associated with uterine fibroids included income decline (AOR = 4.7, 95% CI: 2.1–10.9, p = < 0.001), excessive expenses for transport (AOR = 4.4, 95% CI: 1.6–12.4, p = 0.005), and family history with uterine fibroids (AOR = 4.6, 95% CI: 1.6–13.6, p = 0.005). In contrast, higher level of education and micro polycystic ovarian syndrome were associated with lower prevalence (AOR = 0.3, 95% CI: 0.1–0.9, p = 0.021) and (AOR = 0.2, 95% CI: 0.1–0.97, p = 0.044), respectively. The qualitative findings delineate how contextual factors such as health system failures, long wait times, gender inequality and poverty negatively affect the quality of women’s lives. The poverty cycle of uterine fibroids emerged. Conclusions A vicious cycle of poverty negatively impacts access to care for uterine fibroids in Haiti. Health insurance, social support, and income generating activities may be keys to promote social justice through access to adequate care for women with uterine fibroids in Haiti.

scholarly journals OP0191-PARE DEVELOPMENT OF A PUBLIC AND PATIENT INVOLVEMENT (PPI) RESEARCH NETWORK FOR PEOPLE WHO HAVE RHEUMATIC CONDITIONS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 115.2-115
Author(s):  
L. Larkin ◽  
A. Moses ◽  
T. Raad ◽  
A. Tierney ◽  
N. Kennedy ◽  
...  
Keyword(s):  
Public Health ◽  
Patient Involvement ◽  
Research Network ◽  
Ppi Network ◽  
Face To Face ◽  
The Public ◽  
World Cafe ◽  
Patient Representatives ◽  
The University ◽  
Public And Patient Involvement

Background:Public and patient involvement (PPI) improves quality and relevance of research (1). PPI is advocated by policy makers and funding bodies and is supported by EULAR (2). Arthritis Research Limerick (ARL) is a partnership between researchers at the University of Limerick and clinicians at University Hospitals Limerick. PPI representatives have been involved in ARL projects, however no formal PPI network had been established prior to 2020. The need for a formal PPI network to collaborate with ARL was identified by both ARL and patient representatives. This need arose from a joint ambition to promote meaningful involvement of the public and patients in ARL projects and to develop a platform through which researchers and PPI representatives could collaboratively set research priorities.Objectives:The aim of this project was to create a formal PPI network to engage with people living with rheumatic and musculoskeletal diseases (RMDs) and their families and to identify collaborative research opportunities between ARL and PPI representatives.Methods:A face-to-face PPI seminar was planned for October 2020. The seminar consisted of speakers from ARL providing an overview of research projects and a World Café research ideas session. Funding was obtained through a competitive, peer-review funding call from the PPI Ignite group at the University of Limerick to support the PPI seminar. The funding application was a joint application between ARL members and a PPI partner (iCAN - Irish Children’s Arthritis Network). The seminar was advertised through national patient organisations (iCAN and Arthritis Ireland), social media and ARL research networks.Results:Due to Covid-19 public health restrictions the PPI seminar was held virtually. The ARL PPI inaugural seminar was attended by N=19 researchers and people living with RMDs. The seminar speakers included ARL researchers and a PPI representative. The World Café event was modified to adapt to the virtual seminar delivery. Research ideas were noted by the seminar organiser and summarised for attendees at the end of the research ideas and priorities session. An ARL PPI mailing list was set-up post seminar as a means of communicating with seminar attendees and will serve as a formal PPI network for ARL. Research updates and opportunities will be communicated via this formal network to people living with RMDs and researchers alike.Conclusion:This was the first PPI seminar organised by ARL in collaboration with a PPI seminar, and has led to the creation of a formal PPI network. Delivery mode of the PPI seminar was changed due to Covid-19 public health restrictions. This change may also have impacted engagement and attendance at the PPI seminar, given that virtual events are not accessible to all of the RMD population. Future PPI seminars will consider a hybrid approach of face-to-face and virtual attendance, to enhance accessibility. A formal PPI communication network has been established. Future work will focus future collaborative opportunities between the PPI panel and the ARL group, including project development, co-led research funding applications and joint research dissemination.References:[1]INVOLVE. (2012). Briefing notes for researchers: Involving the public in NHS, public health and social care research. Retrieved from www.invo.org.uk 7th January 2020.[2]de Wit MPT, Berlo SE, Aanerud GJ, et al (2011). European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the Rheumatic Diseases 70:722-726Disclosure of Interests:None declared

scholarly journals Public Interest, Health Research and Data Protection Law: Establishing a Legitimate Trade-Off between Individual Control and Research Access to Health Data

Laws ◽  
2020 ◽  
Vol 9 (1) ◽  
pp. 6 ◽  
Author(s):  
Mark J. Taylor ◽  
Tess Whitton
Keyword(s):  
Public Interest ◽  
Data Protection ◽  
Health Research ◽  
Health Data ◽  
Personal Health ◽  
Positive Contribution ◽  
Data Governance ◽  
The Public ◽  
Individual Control ◽  
Data Protection Law

The United Kingdom’s Data Protection Act 2018 introduces a new public interest test applicable to the research processing of personal health data. The need for interpretation and application of this new safeguard creates a further opportunity to craft a health data governance landscape deserving of public trust and confidence. At the minimum, to constitute a positive contribution, the new test must be capable of distinguishing between instances of health research that are in the public interest, from those that are not, in a meaningful, predictable and reproducible manner. In this article, we derive from the literature on theories of public interest a concept of public interest capable of supporting such a test. Its application can defend the position under data protection law that allows a legal route through to processing personal health data for research purposes that does not require individual consent. However, its adoption would also entail that the public interest test in the 2018 Act could only be met if all practicable steps are taken to maximise preservation of individual control over the use of personal health data for research purposes. This would require that consent is sought where practicable and objection respected in almost all circumstances. Importantly, we suggest that an advantage of relying upon this concept of the public interest, to ground the test introduced by the 2018 Act, is that it may work to promote the social legitimacy of data protection legislation and the research processing that it authorises without individual consent (and occasionally in the face of explicit objection).

scholarly journals Access to, and experiences of, healthcare services by trafficked people: findings from a mixed-methods study in England

2016 ◽  
Vol 66 (652) ◽  
pp. e794-e801 ◽  
Author(s):  
Joanne Westwood ◽  
Louise M Howard ◽  
Nicky Stanley ◽  
Cathy Zimmerman ◽  
Clare Gerada ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Healthcare Services ◽  
Mixed Methods Study

scholarly journals “An Active, Productive Life”: Narratives of, and Through, Participation in Public and Patient Involvement in Health Research

2020 ◽  
Vol 30 (14) ◽  
pp. 2265-2277
Author(s):  
Joanna Reynolds ◽  
Ruth Beresford
Keyword(s):  
Health Research ◽  
Social Life ◽  
Social Practice ◽  
Patient Involvement ◽  
Research Process ◽  
Financial Status ◽  
The Public ◽  
The United Kingdom ◽  
Social Agendas ◽  
Public And Patient Involvement

Public and patient involvement (PPI)—engaging the public in designing and delivering research—is increasingly expected in health research, reflecting recognition of the value of “lay” knowledge of illness and/or caring for informing research. Despite increased understanding of PPI experiences within the research process, little attention has been paid to the meaning of PPI in other areas of contributors’ lives, and its value as a broader social practice. We conducted repeated narrative interviews with five experienced PPI contributors from the United Kingdom to explore how meaning is constructed through narratives of PPI in relation to their broader “life-worlds.” Narratives were extremely varied, constructing identities and meanings around PPI in relation to family and social life, career and employment, financial status, and wider social agendas, as well as health. This emphasizes the importance of recognizing PPI as a social practice with diverse meaning and value beyond health research.

scholarly journals Clinician Perspectives and Design Implications in Using Patient-Generated Health Data to Improve Mental Health Practices: Mixed Methods Study

10.2196/18123 ◽  
2020 ◽  
Vol 4 (8) ◽  
pp. e18123
Author(s):  
Danny T Y Wu ◽  
Chen Xin ◽  
Shwetha Bindhu ◽  
Catherine Xu ◽  
Jyoti Sachdeva ◽  
...  
Keyword(s):  
Mental Health ◽  
Mixed Methods ◽  
Collaborative Care ◽  
Mobile Apps ◽  
Data Interpretation ◽  
Health Data ◽  
Design Guidelines ◽  
Mixed Methods Study ◽  
Semistructured Interviews ◽  
Mhealth Apps

Background Patient-generated health data (PGHD) have been largely collected through mobile health (mHealth) apps and wearable devices. PGHD can be especially helpful in mental health, as patients’ illness history and symptom narratives are vital to developing diagnoses and treatment plans. However, the extent to which clinicians use mental health–related PGHD is unknown. Objective A mixed methods study was conducted to understand clinicians’ perspectives on PGHD and current mental health apps. This approach uses information gathered from semistructured interviews, workflow analysis, and user-written mental health app reviews to answer the following research questions: (1) What is the current workflow of mental health practice and how are PGHD integrated into this workflow, (2) what are clinicians’ perspectives on PGHD and how do they choose mobile apps for their patients, (3) and what are the features of current mobile apps in terms of interpreting and sharing PGHD? Methods The study consists of semistructured interviews with 12 psychiatrists and clinical psychologists from a large academic hospital. These interviews were thematically and qualitatively analyzed for common themes and workflow elements. User-posted reviews of 56 sleep and mood tracking apps were analyzed to understand app features in comparison with the information gathered from interviews. Results The results showed that PGHD have been part of the workflow, but its integration and use are not optimized. Mental health clinicians supported the use of PGHD but had concerns regarding data reliability and accuracy. They also identified challenges in selecting suitable apps for their patients. From the app review, it was discovered that mHealth apps had limited features to support personalization and collaborative care as well as data interpretation and sharing. Conclusions This study investigates clinicians’ perspectives on PGHD use and explored existing app features using the app review data in the mental health setting. A total of 3 design guidelines were generated: (1) improve data interpretation and sharing mechanisms, (2) consider clinical workflow and electronic health record integration, and (3) support personalized and collaborative care. More research is needed to demonstrate the best practices of PGHD use and to evaluate their effectiveness in improving patient outcomes.

scholarly journals Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research

2021 ◽  
Vol 4 ◽  
pp. 11
Author(s):  
Robert Joyce ◽  
Christopher P. Dwyer ◽  
Sinéad M. Hynes
Keyword(s):  
Cognitive Rehabilitation ◽  
Research Team ◽  
Patient Involvement ◽  
Feasibility Trial ◽  
Open Letter ◽  
Research Experience ◽  
The Public ◽  
Research Cycle ◽  
Principle Investigator ◽  
Public And Patient Involvement

In this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principle investigator. We will discuss some of the changes made and the impacts that have been resulted from of PPI input into the trial. We focus on PPI involvement in participant recruitment, the development of trial material, integration of PPI along the research cycle, and collaboration. We hope that this Open Letter will encourage principle investigators and groups to include PPI members as part of the research team and help patients and members of the public understand what the experience of PPI members is like.

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