scholarly journals Patient and Public Involvement for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia

2021 ◽  
Vol 12 ◽  
Author(s):  
Jahanara Miah ◽  
Saima Sheikh ◽  
Rachel C. Francis ◽  
Gayathri Nagarajan ◽  
Sojan Antony ◽  
...  
Keyword(s):  
South Asia ◽  
Study Protocol ◽  
Public Engagement ◽  
Online Survey ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Middle Income ◽  
Middle Income Countries ◽  
Dementia Research

Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different “rings” of the Wellcome Trust's “Public Engagement Onion” model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research.Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production.Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia.

scholarly journals Capacity & capability building for applied dementia research in low- & middle-income countries: Two exemplars from South Asia

2020 ◽  
Vol 152 (6) ◽  
pp. 614
Author(s):  
Iracema Leroi ◽  
Sridhar Vaitheswaran ◽  
Saima Sheikh ◽  
Nasim Chaudhry ◽  
SP Goswami ◽  
...  
Keyword(s):  
South Asia ◽  
Middle Income ◽  
Middle Income Countries ◽  
Low Middle Income Countries ◽  
Capability Building ◽  
Dementia Research

scholarly journals A study of the reporting of patient and public involvement and engagement (PPIE) in orthodontic research

2020 ◽  
pp. 146531252096857
Author(s):  
Veena A Patel ◽  
Jonathan Shelswell ◽  
Neil Hillyard ◽  
Sue Pavitt ◽  
Sophy K Barber
Keyword(s):  
Medical Research ◽  
Public Engagement ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Research Articles ◽  
Sources Of Information ◽  
Research Activity ◽  
High Quality Research ◽  
Research Reporting

Introduction: Patient and public involvement and engagement (PPIE) in research is an essential component of high-quality research. Patients and the public can identify which research topics are most relevant to them, contribute to study design, and interpretation and dissemination of findings. While inclusion of PPIE is widely adopted in medical research, awareness within the dental research community is more limited. Aim: To examine patient and public involvement and engagement in orthodontic research activity. Design: Identification and appraisal of use of PPIE in orthodontic research reporting and funding applications using a systematic approach. Methods: Three sources of information were examined: (1) research articles published between September 2018 and September 2019 in four major orthodontic journals. Articles were examined for reported PPIE; (2) common funding bodies for orthodontic research were assessed to establish whether PPIE was mandated (National Institute for Health Research, Medical Research Council, Wellcome Trust, Chief Scientist Office (Scotland), Health and Care Research Wales, British Orthodontic Society Foundation, Royal College of Surgeons and CLEFT); and (3) publication guidance for authors in these journals was examined to identify whether reporting of PPIE was included. Results: Of the 363 research articles, 2 (0.6%) mention patient/public involvement. None of the 363 research articles mention patient/public engagement. Of nine funding bodies, 2 (22%) request evidence of patient/public involvement as a condition of receiving funding with one (11%) expecting evidence of public engagement to be provided as a condition of receiving funding. None of the four major orthodontic journals include patient/public involvement and/or engagement in their guidance for authors. Conclusion: There is currently: (1) a notable lack of reporting of PPIE in orthodontic research; (2) variability in the requirements of funding bodies for researchers to include PPIE in funding applications and throughout the research process; and (3) no stipulation in journals’ instructions for authors.

scholarly journals Importance of involving patients and public in health research in Bangladesh and Nepal

2020 ◽  
pp. 1-3
Author(s):  
Bibha Simkhada ◽  
Edwin van Teijlingen ◽  
Aliya Naheed ◽  
Angela Warren ◽  
Sue Green
Keyword(s):  
Public Health ◽  
Health Research ◽  
Public Involvement ◽  
Health Sector ◽  
Health Technology ◽  
Public Health Research ◽  
Patient And Public Involvement ◽  
Middle Income ◽  
Middle Income Countries ◽  
Local Research

Abstract Patient and public involvement/engagement (PPI/E) in public health research and health technology assessment (HTA) in high-income countries (HICs) have significantly increased over the past decade. PPI/E helps to improve research and HTA, ultimately benefitting patients and service users. PPI/E is a very new concept in many low- and middle-income countries (LMICs). This paper considers the importance of PPI in public health research and HTA in the development and implementation of technology in the health sector in South Asia. Currently, in this region, health technology is frequently adopted from HICs without local research and HTA. It also discusses the importance of local co-creation of technology to reflect the needs of users within a culturally appropriate setting. It is important for LMIC-based researchers to understand the potential of PPI/E and how it can contribute to it to improve health care and research, especially perhaps in the era of COVID-19.

scholarly journals Patient and public involvement in health research in low and middle-income countries: a systematic review

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e026514 ◽  
Author(s):  
Natalie Cook ◽  
Najma Siddiqi ◽  
Maureen Twiddy ◽  
Richard Kenyon
Keyword(s):  
Systematic Review ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Community Empowerment ◽  
Expert Advice ◽  
Middle Income ◽  
Level Of Involvement ◽  
Middle Income Countries ◽  
The Impact

ObjectivesPatient and public involvement (PPI) is argued to lead to higher quality health research, which is more relatable to and helps empower the public. We synthesised the evidence to look for examples of PPI in health research in low/middle-income countries (LMICs), looking at levels of involvement and impact. Additionally, we considered the impact of who was undertaking the research on the level of involvement and reported impact.DesignSystematic review.Data sourcesEMBASE, Medline and PsychINFO, along with hand-searching references, grey literature, Google search and expert advice.Eligibility criteriaAny health research with evidence of patient or public involvement, with no language restrictions dated from 1978 to 1 Dec 2017.Data extraction and synthesisData relating to stage and level of involvement, as well as impact, were extracted by one researcher (NC), and a coding framework was developed using an inductive approach to examine the impact of PPI on research. Extracted data were then independently coded by a second lay researcher (RK) to validate the data being collected. Discrepancies were referred to a third independent reviewer (MT) for review and consensus reached.ResultsSixty-two studies met the inclusion criteria. The review revealed the most common stage for PPI was in research planning, and the most common level of involvement was collaboration. Most studies did not provide evidence of effectiveness or elaborate on the impact of PPI, and they tended to report impact from the researcher’s perspective. Where impact was mentioned, this generally related to increased relevance to the community, empowerment of participants and alterations in study design.ConclusionsThe literature describing approaches to and impact of PPI on LMIC health research is sparse. As PPI is essential to conducting high-quality research, it should be fully reported and evaluated at the end of the research project.

scholarly journals Involving Persons with Dementia in Social Research: A Literature Review

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 643-643
Author(s):  
Pamela Manley ◽  
Candace Kemp
Keyword(s):  
Literature Review ◽  
Public Involvement ◽  
Social Research ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Emotional Expressions ◽  
Participatory Action ◽  
Research Participants ◽  
Centered Care ◽  
Dementia Research

Abstract Studies involving persons with dementia as research participants have increased over the years, due in part to an emphasis on patient and public involvement in health care and participatory action research. Recent studies indicate a growing trend toward engaging persons with dementia, not only as participants, but also as co-researchers. Further, studies involving persons with dementia as co-researchers and advisers have garnered increased attention due to the inclusion of this population’s unique perspectives and lived experiences. Theoretically, frameworks such as person-centered- and relationship-centered care, also influence and shape the research process. This literature review examines empirical research conducted over the past decade that reports the involvement of persons with dementia as research participants (“research on”) and co-researchers and advisers (“research with”). Among the 27 articles identified, 12 reported “research on,” and 15 reported “research with” persons with dementia. “Research on” targeted participants’ emotional expressions/responses, engagement in exercise/activities; social environment influences, and cognitive training; whereas “research with,” which was mostly qualitative, focused on co-researchers’ perspectives of and experiences with the research process; needs, priorities, and recommendations in research planning; partnering with persons with dementia on the design and development of research instruments, and the importance of critically evaluating the research process. Findings documenting research challenges, complexities, and ethical concerns are also discussed. Overall, findings demonstrate the feasibility of involving persons with dementia in a meaningful way and further affirms that including them as co-researchers is not only beneficial, but has the potential to enhance the entire research process.

scholarly journals The impact of COVID-19 on the care of people living with noncommunicable diseases in low- and middle-income countries: an online survey of physicians and pharmacists in nine countries

2021 ◽  
Vol 22 ◽  
Author(s):  
Chris Bullen ◽  
Jessica McCormack ◽  
Amanda Calder ◽  
Varsha Parag ◽  
Kannan Subramaniam ◽  
...  
Keyword(s):  
Public Health ◽  
Healthcare Workers ◽  
Online Survey ◽  
World Health ◽  
Noncommunicable Diseases ◽  
Middle Income ◽  
Middle Income Countries ◽  
Health Measures ◽  
The Impact ◽  
Low And Middle Income

Abstract Background: The global COVID-19 pandemic has disrupted healthcare worldwide. In low- and middle-income countries (LMICs), where people may have limited access to affordable quality care, the COVID-19 pandemic has the potential to have a particularly adverse impact on the health and healthcare of individuals with noncommunicable diseases (NCDs). A World Health Organization survey found that disruption of delivery of healthcare for NCDs was more significant in LMICs than in high-income countries. However, the study did not elicit insights into the day-to-day impacts of COVID-19 on healthcare by front-line healthcare workers (FLHCWs). Aim: To gain insights directly from FLHCWs working in countries with a high NCD burden, and thereby identify opportunities to improve the provision of healthcare during the current pandemic and in future healthcare emergencies. Methods: We recruited selected frontline healthcare workers (general practitioners, pharmacists, and other medical specialists) from nine countries to complete an online survey (n = 1347). Survey questions focused on the impact of COVID-19 pandemic on clinical practice and NCDs; barriers to clinical care during the pandemic; and innovative responses to the many challenges presented by the pandemic. Findings: The majority of FLHCWs responding to our survey reported that their care of patients had been impacted both adversely and positively by the public health measures imposed. Most FLHCs (95%) reported a deterioration in the mental health of their patients. Conclusions: Continuity of care for NCDs as part of pandemic preparedness is needed so that chronic conditions are not exacerbated by public health measures and the direct impacts of the pandemic.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

Sign in / Sign up

Export Citation Format

Share Document