scholarly journals Fleshing out the data: when epidemiological researchers engage with patients and carers. Learning lessons from a patient involvement activity

BMJ Open ◽  
2020 ◽  
Vol 10 (9) ◽  
pp. e036311
Author(s):  
Melanie Morris ◽  
Yuki Alencar ◽  
Bernard Rachet ◽  
Richard Stephens ◽  
Michel P Coleman
Keyword(s):  
Quantitative Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Cancer Survival ◽  
Essential Element ◽  
Secondary Data ◽  
Patient And Public Involvement ◽  
Survival Group ◽  
National Cancer Research Institute ◽  
Future Events

Patient and public involvement and engagement has become an essential element of health research, ensuring aims and outputs are worthwhile and relevant. However, research involving secondary data analyses does not present immediately obvious ways to involve patients and the public. Innovative approaches to ensure their involvement is meaningful and effective are required.The Cancer Survival Group cohosted a full-day meeting with the National Cancer Research Institute Consumer Forum—a group of patients and carers. This included the Forum’s ‘Dragons’ Den’: a small-group session in which their members provided insight, advice and ideas on current or planned research in the Cancer Survival Group.We investigated this activity as an example of effective patient involvement, with the aim of developing broad recommendations to improve epidemiological/quantitative research by involving patients and carers as directly as possible.In addition to quantitative data captured through evaluation forms completed after the event, we used semistructured interviews of a sample of participants to evaluate the effectiveness of the session and to learn lessons. The interviews were analysed to identify broad or recurrent themes and recommendations.Feedback was overwhelmingly positive, and some impacts on the research projects were identified. Interviewees commented on overall expectations and experiences, as well as specifics of room layout, timing of the session, composition of groups, effectiveness of the facilitation and content of discussions.We present a summary of our findings as a guide for other researchers, including recommendations for improvement gleaned from the interviews. The value to researchers of hosting and participating in such activities was clear. We developed recommendations that should help to improve future events for ourselves and for others who wish to conduct similar activities, which in turn may lead to more concrete benefits for research and patients.

scholarly journals Innovating public engagement and patient involvement through strategic collaboration and practice

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah Holmes ◽  
Katharine Cresswell ◽  
Susannah Williams ◽  
Suzanne Parsons ◽  
Annie Keane ◽  
...  
Keyword(s):  
Professional Practice ◽  
Public Engagement ◽  
Health Research ◽  
Patient Involvement ◽  
Economies Of Scale ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Activity ◽  
North West ◽  
The Impact

Abstract Background Patient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all. Methods This paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice – a 'cycle' of engagement and involvement – innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice. Results Here, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere. Conclusions Our practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice – the ‘cycle’ of engagement and involvement – is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.

PP124 Smart Capability Building For Effective Patient Involvement

2019 ◽  
Vol 35 (S1) ◽  
pp. 59-60
Author(s):  
Claire Davis ◽  
Sophie Hughes ◽  
Susan Myles
Keyword(s):  
Best Practice ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
The Public ◽  
Health Technologies ◽  
Capability Building ◽  
Working Together ◽  
Strategy Building

IntroductionA new Health Technology Assessment (HTA) agency, Health Technology Wales (HTW), has been established to consider the identification, appraisal, and adoption of non-medicine health technologies. This includes, for example, medical devices, surgical procedures and diagnostics. HTW recognizes the importance of effective patient and public involvement (PPI) and is building smart capabilities.MethodsHTW consulted with external organizations to identify the first steps toward effective PPI. Public partners were recruited as a priority before working together on a PPI strategy. Building smart capabilities is key to establishing effective PPI and future-proofing. HTW established a PPI Standing Group to inform HTW throughout its work, including the development of processes and procedures.ResultsKnowledge and resources have been shared and future collaborations identified, including events to encourage new topics from patients and the public. The HTW PPI lead has become a member of key PPI groups, locally and internationally. HTW has recruited public partners who are actively contributing as full members of the Assessment Group and the Appraisal Panel; two members on each Committee. The PPI Standing Group has been established. They have provided advice and co-produced PPI tools for piloting.ConclusionsThe PPI Standing Group concluded that PPI methods and approaches should be tailored for each project based on best practice, and should be piloted to allow them to evolve based on impact evaluation. A PPI strategy or framework would be more useful at a later stage. HTW is committed to identifying and following best practice. Future-proofing and building smart capability will be key to ensuring that HTW develops effective PPI that can be dynamic and responsive to the evolving PPI and HTA landscapes.

scholarly journals Innovative Patient Involvement During Covid-19: Keeping Patients at the Heart of HTA

2021 ◽  
Vol 3 ◽  
Author(s):  
Mark Rasburn ◽  
Helen Crosbie ◽  
Amanda Tonkinson ◽  
David Chandler ◽  
Tasneem Dhanji ◽  
...  
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
Potential Barriers ◽  
The United Kingdom ◽  
Patient Representatives ◽  
Virtual Setting ◽  
Patient Concerns ◽  
Rapid Shift

The COVID-19 pandemic and lockdown measures in the United Kingdom resulted in significant challenges and created opportunities for innovation to keep patients at the heart of HTA. The introduction of the Coronavirus Act 2020 and the associated public health guidance meant that NICE's conventional HTA methods were no longer feasible. NICE introduced rapid, innovative updates to patient and public involvement (PPI), decision-making meetings, and consultations to harness the expertise of patients and the public to ensure guidance addressed the expected concerns and identified barriers which could impact access. This article describes the PPI support for NICE's rapid shift to virtual meetings and virtual engagement. We utilize the authors' experience and patient and public contributor feedback to understand the experience of participating in a virtual setting and identify four themes: accessibility; inclusivity; transparency; and intrapersonal relationships and committee dynamics. The article also considers how patient representatives participated in, and facilitated, the development of guidance for a hypothetical technology to keep patients and the public at the heart of expedited and novel HTA processes to identify and understand the expected patient concerns and potential barriers for when a technology would be introduced.

scholarly journals Role of patients’ organizations in Health Technology Assessment: a Habermasian system and lifeworld perspective

2020 ◽  
pp. 1-4
Author(s):  
Neda Milevska-Kostova ◽  
Sita Ratna Devi Duddi ◽  
Richard J. Cooper
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Patient Involvement ◽  
Public Involvement ◽  
Communicative Action ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Social Theories ◽  
Policy Communities

Abstract Patient and public involvement in Health Technology Assessment (HTA) is gaining increased interest among research and policy communities. Patients’ organizations represent an important link between individual patients and the health system. Social theories are increasingly being used to explain doctor–patient–system interactions, expanding understanding beyond the mere clinical perspective. In this sense, patient involvement in HTA can also be considered through the Habermas’s theory of communicative action. From a Habermasian perspective, HTA as part of the instrumental rationality contributes to an increased efficiency of resource use within the system; however, such rationalization threatens to colonize the lifeworld by making it “increasingly state administered with attenuated possibilities for communicative action as a result of the commercialization and rationalization in terms of immediate returns.” Using Habermasian system/lifeworld framework, this paper explores opportunities and obstacles to patient involvement in HTA, whereby trying to understand current and possible roles of patients’ organizations as a mediating force between HTA as a function of the system and the lifeworld represented by patients.

scholarly journals P074 Insights into creating a virtual patient and public involvement initiative

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Eleanor Hawkins ◽  
Tracy Hyndman ◽  
Raj Amarnani ◽  
James Kimpton ◽  
Su-Ann Yeoh ◽  
...  
Keyword(s):  
Biomedical Research ◽  
Health Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Face To Face ◽  
London Hospital ◽  
University College ◽  
University College London

Abstract Background/Aims  Patient and public involvement (PPI) initiatives are important to ensure patient-centered research. However, traditional focus groups can present challenges including the recruitment and retention of patient partners. Additional challenges to patient involvement have also arisen due to the coronavirus pandemic (COVID-19). The University College London (UCL) Patient Partners in Rheumatology Research initiative has been developed to explore novel ways to boost patient involvement and foster an active collaboration between basic researchers and patient partners. Methods  Two online surveys were designed to obtain information with regards to the expectations and practicalities of this initiative. One survey was sent to patients who had registered an interest in being patient partners and the other survey to rheumatology researchers at UCL and University College London Hospital (UCLH). Results  We received responses from 25 researchers and 21 patients. The majority of patients who responded (71%) had not previously been involved in PPI. Most of the researchers (84%) had previously utilised PPI, however 20% of those had some difficulty accessing it. Most patients (86%) were interested in becoming a patient partner. Amongst those with reservations, one stated that “I don't think I have the qualifications to be involved with scientists and researchers”. Over half of patients (52%) were happy to participate in PPI more than five times a year and most researchers (84%) expressed that five times a year was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to social restrictions because of COVID-19, we asked both patients and researchers their preferred mode of meeting. Both groups favoured a mixed (virtual and face to face) meeting arrangement (81% for patients and 68% for researchers). A third of patients (38%) expressed that they would need technical assistance accessing a virtual meeting. Almost all patients (95%) were happy to contribute to lay summary reviews remotely via email. Conclusion  Based on the insights gained from the survey results, our PPI initiative meetings will be hosted in a hybrid virtual/face to face format. These will be held at a time and frequency that is convenient for the patient partners to increase participation across wider demographics. This survey has highlighted that we have to be mindful of certain patient perceptions of PPI which creates a barrier to patient involvement and that some individuals may require further support in accessing virtual meetings. By designing a PPI initiative that creatively addressed the needs of both the researchers and patient partners we hope to create a platform for productive dialogue and collaboration to ensure patient-centred research, despite the changes brought about by the COVID-19 pandemic. Disclosure  E. Hawkins: Other; funded by National Institute of Health Research, Clinical Research Network. T. Hyndman: None. R. Amarnani: None. J. Kimpton: None. S. Yeoh: Other; University College London Hospital National Institute of Health Research Biomedical Research Centre, UCLH Charities, Royal College of Physicians and Rosetrees Trust. M. Castelino: Other; University College London Hospitals National Institute for Health Research Biomedical Research Centre.

scholarly journals Governing Researchers through Public Involvement

2021 ◽  
pp. 1-16
Author(s):  
ARIS KOMPOROZOS-ATHANASIOU ◽  
JONATHAN PAYLOR ◽  
CHRISTOPHER MCKEVITT
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Research Policy ◽  
Patient And Public Involvement ◽  
Research Governance ◽  
Professional Identities ◽  
Depth Interview ◽  
Recent Developments ◽  
Professional Research ◽  
Health Research Policy

Abstract This paper focuses on recent developments in UK health research policy, which place new pressures on researchers to address issues of accountability and impact through the implementation of patient and public involvement (PPI). We draw on an in-depth interview study with 20 professional researchers, and we analyse their experiences of competing for research funding, focusing on PPI as a process of professional research governance. We unearth dominant professional narratives of scepticism and alternative identifications in their enactment of PPI policy. We argue that such narratives and identifications evidence a resistance to ways in which patient involvement has been institutionalised and to the resulting subject-positions researchers are summoned to take up. We show that the new subjectivities emerging in this landscape of research governance as increasingly disempowered, contradictory and fraught with unresolved tensions over the ethical dimensions of the researchers’ own professional identities.

scholarly journals A 10-year impact assessment of the Efficacy and Mechanism Evaluation (EME) programme: an independent mixed-method evaluation study

2021 ◽  
Vol 8 (20) ◽  
pp. 1-106
Author(s):  
Maike C Rentel ◽  
Kelly Simpson ◽  
Anoushka Davé ◽  
Scott Carter ◽  
Margaret Blake ◽  
...  
Keyword(s):  
Clinical Research ◽  
Economic Impact ◽  
Public Involvement ◽  
Secondary Data ◽  
Patient And Public Involvement ◽  
Health Needs ◽  
Representative Sampling ◽  
Stakeholder Consultation ◽  
Use Of Resources ◽  
Desk Research

Background The Efficacy and Mechanism Evaluation (EME) programme – a Medical Research Council (MRC) and National Institute for Health Research (NIHR) partnership – funds trials that evaluate the efficacy of interventions with the potential to promote health and studies that improve our understanding of the mechanisms of underlying diseases and their treatments. Objective To conduct an independent review of the EME programme’s impact and identify opportunities for future improvement. Design A mixed-methods approach, including desk research, an analysis of secondary data, stakeholder consultation and the development of impact case studies. Participants Chief investigators of EME awards, unfunded applicants to the EME programme and key opinion leaders relevant to the programme and research ecosystem. Interventions No interventions were tested, as this was a retrospective programme evaluation. Main outcome measures The evaluation was guided by a set of 15 evaluation questions. Results The EME programme bridges the gap between proof-of-concept and effectiveness studies that are located among other MRC and NIHR schemes and grants from charities in the funding landscape. Mechanistic studies alongside EME trials add value by lending confidence to trial findings and providing insights into the underlying biology. Between 2009 and September 2018, £175.7M in funding was approved for 145 EME projects. EME programme-funded research has started to deliver value to the NHS and patients by improving treatments and providing more efficient use of resources. Of the 43 completed trials, 14% (n = 6) showed that the intervention had a positive effect, whereas 74% (n = 32) of trials did not. The remaining five (12%) trials were unable to recruit participants or did not proceed to the full-trial stage. Seven projects (i.e. 16% of completed trials) have informed clinical guidelines or regulatory approval decisions and another eight projects have the potential to do so in the future, given the nature of their findings. Projects in the EME programme portfolio address a range of UK health needs and government priority areas, but they do not fully align with the level of health needs present. Commissioned calls for applications steer applicants. However, many commissioned calls do not lead to funded awards, and a better understanding of the underlying reasons for this would enable targeted supported to address key health needs. The majority of EME projects investigate existing interventions of limited commercial interest, focusing on repurposing (67/136, 49%) and informing current practice (23/136, 17%). Although there is little evidence of wider economic impact from commercial benefits, the EME programme is important in funding research in which industry is unlikely to invest. Stronger co-ordination with other funders, such as charities, could lead to synergies, enhancing the potential for health impact and influence on other funders’ agendas. The main challenges identified for EME projects were ‘complex and slow contracting processes’ (35/46, 76%), ‘setting up of study sites’ (30/46, 65%) and patient recruitment (28/46, 61%). Enablers of research included a clinical research fellow position on the project and support from Clinical Research Networks and Biomedical Research Centres. Nearly all of the chief investigators consulted had engaged in patient and public involvement at some project stage, and a lack of patient and public involvement did not emerge as a barrier to research or impact. Research ideas stemming from patients were, however, over-represented among unfunded applications, but the reason for this is unclear. Limitations Only about one-third of all studies had been completed or had published their main findings, necessitating a purposive, rather than representative, sampling of the portfolio. The COVID-19 outbreak cut short the programme of interviews, limiting the depth to which some evaluation questions could be explored. Several data sources were based on self-reporting by chief investigators; whereas key self-reported aspects were verified through desk research, this was not possible for all findings. Conclusions The EME programme plays an important role in the UK research funding landscape and has started to deliver value to the NHS and patients. Based on the evidence gathered, seven recommendations were developed to enhance the EME programme’s health and economic impact and address challenges encountered by chief investigators in implementing research projects. Funding This project was funded by the EME programme, a MRC and NIHR partnership. This will be published in full in Efficacy and Mechanism Evaluation; Vol. 8, No. 20. See the NIHR Journals Library website for further project information.

scholarly journals Public and patient involvement in research on ageing and dementia

2020 ◽  
Vol 19 (3) ◽  
pp. 259-264
Author(s):  
Julian Ashton ◽  
Clare F. Aldus ◽  
Peter Richmond ◽  
Helen Allen
Keyword(s):  
Patient Involvement ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Social Implications ◽  
Content Type ◽  
The Public ◽  
Leading Role ◽  
Current State ◽  
Significant Difference ◽  
Public And Patient Involvement

Purpose This paper aims to assess the current state, and various methods, of public and patient involvement, particularly but not exclusively in research on ageing and dementia. Design/methodology/approach Interviews were carried out with a researcher, who has had a leading role in research on dementia; a public contributor with extensive relevant experience; and a member of the research design service with responsibility for patient and public involvement. Findings All those involved in the research can benefit considerably from public and patient involvement and it can make a significant difference to the course of a project. The importance of choosing an appropriate method of involvement is discussed and planning for it in both financial terms and time allowed. Examples are given of successful studies. Research limitations/implications Those who took part in the interviews were chosen for their record in furthering public and patient involvement in research. There is no attempt to compare their views with those of the wider research community. Practical implications The various ways in which patients and the public are involved in relevant research is a guide to those designing projects and those who may want to explore opportunities for involvement. Social implications Social implications include being able to influence research projects, contributors of all ages find they are valued. Originality/value The format of the paper is original, eliciting material from three viewpoints on research and involvement.

scholarly journals Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Beatriz Goulao ◽  
Hanne Bruhn ◽  
Marion Campbell ◽  
Craig Ramsay ◽  
Katie Gillies
Keyword(s):  
Focus Groups ◽  
Priority Setting ◽  
Quantitative Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
The Public ◽  
James Lind Alliance ◽  
Communication Needs ◽  
Level Of Understanding

Abstract Background and aims Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners’ experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in. Methods The study had two stages: (1) online focus groups with patient and public partners recruited via online platforms and analysed using inductive thematic analysis and (2) online priority setting meeting with UK- and Ireland-based stakeholders and following James Lind Alliance methodology. Pre-selected numerical aspects were introduced prior to the meeting and discussed and prioritised based on a voting system. Results In stage 1, we held two focus groups with patient and public partners (n = 9). We identified four themes in the analysis: “Determinants of PPI in numerical aspects”, “Identity and roles”, “Impact of involving patients and the public in numerical aspects”. Patient and public partners believed being involved in numerical aspects of research is important and should be facilitated, but communication about these aspects needs to be clearer. An environment and relationship with researchers that facilitates that will include time for discussion, support to improve knowledge and confidence, clear language and definitions and trust. Patient and public partners perceive their role as bringing an outsider perspective and were mainly interested in involvement in assumptions and dissemination of quantitative research. They believed this can lead to more transparency and improve their experience by making involvement more meaningful. In stage 2, we identified twelve numerical aspects of trials to be prioritised. We held a priority setting meeting with 14 stakeholders, which led to the selection of three priority numerical aspects in patient and public involvement: target differences, interpretation of results and cost-effectiveness. Participants felt all aspects should be considered for involvement and their communication needs to ensure a shared level of understanding to avoid power imbalances. Conclusions Our work shows the importance of involving patient and public partners in numerical aspects of trials by assessing their experiences and motivations for the first time and discussing and prioritising which numerical aspects of trials are the most important for patients and the public to contribute to. Our research provides a platform for future efforts to improve patient and public involvement in trials and a prioritised set of future research foci.

A framework for action to improve patient and public involvement in health technology assessment

2021 ◽  
Vol 38 (1) ◽  
Author(s):  
Aline Silveira Silva ◽  
Karen Facey ◽  
Stirling Bryan ◽  
Dayani Galato
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Mixed Methods Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Rapid Review ◽  
Communication Capacity ◽  
Three Phase

Abstract Background Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA. Methods This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework. Results According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies. Conclusions Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

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