Patient Involvement In Research Research Articles

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals.

Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33–37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium‐68‐Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two‐thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.

Beyond Survival in Solid Organ Transplantation: A Summary of Expert Presentations from the Sandoz 6th Standalone Transplantation Meeting, 2018.

Beyond Survival in Solid Organ Transplantation: A Summary of Expert Presentations from the Sandoz 6th Standalone Transplantation Meeting, 2018.

Patient and public involvement in designing and conducting doctoral research: the whys and the hows

Plain English summaryEvidence shows that public and patient involvement in research has a positive effect on its quality and end-results. Thus, public and patient involvement in all stages of research is becoming commonplace. There are limited detailed examples however, that describe how to make this possible, especially for those doing PhD research. Doctoral researchers are often new to research practice or have limited experience and are often bound by strict time and financial constraints. It is also not usually a requirement of the award to involve public and patients in their research. Hence, they may not feel confident or motivated to involve or engage with public and patients during their research. We, four doctoral researchers, share examples from our own research studies that have included different approaches to public and patient involvement. Two studies formed public and patient advisory groups who helped design the research questions, data collection tools and recruitment methods. One enlisted the help of an online public and patient panel from a local hospital. A different study worked with patients from an established group to help define key medical words. We did face some challenges, such as the need to develop good group work skills and to apply for grants to cover reimbursement, but we all found it beneficial to involve patients in our studies. We noticed a positive effect on each study’s progression and an improvement in our own self-esteem. In addition, having public and patient involvement helped reduce the isolation we felt as doctoral researchers. Thus, we strongly encourage more doctoral researchers to involve public and patients in their studies.Public and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings.We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies.The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.

The need to establish sustainable public and patient involvement in research in low and middle income countries

The need to establish sustainable public and patient involvement in research in low and middle income countries

SAT-235 PRINCIPLES AND STRATEGIES FOR INVOLVING PATIENTS IN RESEARCH IN CHRONIC KIDNEY DISEASE: REPORT FROM NATIONAL WORKSHOPS

There is widespread recognition that research will be more impactful if it arises from partnership between patients and researchers, but evidence on best practice for achieving this remains limited. Patient involvement in research is particularly relevant in chronic kidney disease as patients face a life-long condition with mortality rates up to 100 times higher than the general population, and impaired quality of life. Yet there remains a substantial mismatch between the priorities of patients and research.

Editorial: The European Patients Academy on Therapeutic Innovation (EUPATI) Guidelines on Patient Involvement in Research and Development

Editorial: The European Patients Academy on Therapeutic Innovation (EUPATI) Guidelines on Patient Involvement in Research and Development

Public and patient involvement in dementia research: Time to reflect?

Public and patient involvement in research is a well-established requirement for applications to many grant-awarding bodies. Numerous models of consultation, collaboration and leadership have been developed to support all stages of research, from ideas development through to project execution and dissemination of findings. However, the interface between researchers and lay members is not always a happy one; scientific 'fact' may not square with lived experience; clinical researchers may regard their accumulated knowledge from working with many people with dementia and their families as 'more valid' than the individual experience(s) of a small number of public and patient involvement representatives; public and patient involvement members can fall victim to tokenism and manipulation. In this opinion piece, I consider the nature of representation in public and patient involvement in dementia research, and whether identifying disconfirmatory cases provides greater value than current consensus building approaches. I conclude by encouraging researchers to listen, reflect and embrace the opportunity to engage with alternative perspectives.

Patient Involvement in Healthcare-Associated Infection Research: A Lexical Review.

OBJECTIVEThis review examines patient involvement in healthcare-associated infection (HAI) research. Healthcare-associated infections represent an intractable issue with considerable implications for patients and staff. Participatory methodologies that involve patients in healthcare research are associated with myriad benefits.DESIGNLexical review.METHODSPubMed was searched to identify all publications on patient involvement in HAI research since 2000; publications were also identified from the cited references. A lexical analysis was conducted of the methods sections of 148 publications.RESULTSThe findings reveal that HAI research that actively involves patients and members of the public is limited.CONCLUSIONSPatient involvement is largely limited to recruitment to HAI studies rather than extended to patient involvement in research design, implementation, analysis, and/or dissemination. As such, there is considerable opportunity to further this important research area via alternative methodologies that award primacy to patient expertise and agency.Infect Control Hosp Epidemiol 2018;39:710-717.

Patient involvement in a systematic review: Development and pilot evaluation of a patient workshop

Patient involvement (PI) in research is increasingly required as a means to improve relevance and meaningfulness of research results. PI has been widely promoted by the National Institute for Health Research in England in the last years. In Germany, widespread involvement of patients in research is still missing. The methods used to realize PI have been developed mainly in English research contexts, and detailed information on how to involve patients in systematic reviews is rare. Therefore, the aim of the study was that patients contribute and prioritize clinically relevant outcomes to a systematic review on meta-cognitive interventions, and to evaluate a patient workshop as well as patients’ perceptions of research involvement. Seven patients with experience in psychiatric care participated in our workshop. They focused on outcomes pre-defined in the review protocol (e.g., meta-cognitive or cognitive changes, symptomatology, quality of life), neglected other outcomes (like satisfaction with treatment, acceptability), and added relevant new ones (e.g., scope of action/autonomy, applicability). Altogether, they valued the explicit workshop participation positively. However, some suggested to involve patients at an earlier stage and to adapt the amount of information given. Further systematic reviews would benefit from the involvement of patients in the definition of other components of the review question (like patients or interventions), in the interpretation of key findings or in drafting a lay summary.

Patients' Participation in Health Research: A Classification of Cooperation Schemes.

BackgroundThe number of academic papers referring to patient engagement or to related terms has been rising sharply for at least 20 years; several review articles have recently been published enumerating a wide variety of situations of patient involvement in research and partnership with health professionals.ObjectiveAs no standardized keywords and no shared classifications exist to facilitate comparative studies of situations where patients and their organizations are recognized as coresearchers, this paper purports to create a typology to analyze those situations.MethodsBased on 8 already existing meta-reviews or related studies, this work is achieved using a template based on Claude Bernard’s conceptualization about experimental medicine.ResultsThis typology allows differentiating between modes of involvement and levels of patients reflexivity mobilized in evidence-based medicine (EBM) trials. Screening through a first set of various meta-reviews using this typology shows that a high level of reflexivity is seldom observed and seen only when a patient organization (PO) is involved in the process. This suggests that such an organization can play several roles essential to high reflexivity trials; the PO is capable not only of grouping singular approaches but also of synchronizing and correlating them. However, as nowadays health researchers and POs give more attention to syndromes or troubles for which EBM clinical trials are not relevant due to lack of biomedical indicators (eg, fibromyalgia, chronic fatigue syndrome, or psychiatric disorders), a supplementary mediation category is added to take into account action-research, community-based participatory research, and grounded theories.ConclusionsWith this new category, this typology should be able to classify most of the cooperation schemes and thus be a useful tool for the next systematic reviews.

The Promise and Pitfalls of Using Crowdsourcing in Research Prioritization for Back Pain: Cross-Sectional Surveys.

BackgroundThe involvement of patients in research better aligns evidence generation to the gaps that patients themselves face when making decisions about health care. However, obtaining patients’ perspectives is challenging. Amazon’s Mechanical Turk (MTurk) has gained popularity over the past decade as a crowdsourcing platform to reach large numbers of individuals to perform tasks for a small reward for the respondent, at small cost to the investigator. The appropriateness of such crowdsourcing methods in medical research has yet to be clarified.ObjectiveThe goals of this study were to (1) understand how those on MTurk who screen positive for back pain prioritize research topics compared with those who screen negative for back pain, and (2) determine the qualitative differences in open-ended comments between groups.MethodsWe conducted cross-sectional surveys on MTurk to assess participants’ back pain and allow them to prioritize research topics. We paid respondents US $0.10 to complete the 24-point Roland Morris Disability Questionnaire (RMDQ) to categorize participants as those “with back pain” and those “without back pain,” then offered both those with (RMDQ score ≥7) and those without back pain (RMDQ <7) an opportunity to rank their top 5 (of 18) research topics for an additional US $0.75. We compared demographic information and research priorities between the 2 groups and performed qualitative analyses on free-text commentary that participants provided.ResultsWe conducted 2 screening waves. We first screened 2189 individuals for back pain over 33 days and invited 480 (21.93%) who screened positive to complete the prioritization, of whom 350 (72.9% of eligible) did. We later screened 664 individuals over 7 days and invited 474 (71.4%) without back pain to complete the prioritization, of whom 397 (83.7% of eligible) did. Those with back pain who prioritized were comparable with those without in terms of age, education, marital status, and employment. The group with back pain had a higher proportion of women (234, 67.2% vs 229, 57.8%, P=.02). The groups’ rank lists of research priorities were highly correlated: Spearman correlation coefficient was .88 when considering topics ranked in the top 5. The 2 groups agreed on 4 of the top 5 and 9 of the top 10 research priorities.ConclusionsCrowdsourcing platforms such as MTurk support efforts to efficiently reach large groups of individuals to obtain input on research activities. In the context of back pain, a prevalent and easily understood condition, the rank list of those with back pain was highly correlated with that of those without back pain. However, subtle differences in the content and quality of free-text comments suggest supplemental efforts may be needed to augment the reach of crowdsourcing in obtaining perspectives from patients, especially from specific populations.

Questioning patient engagement: research scientists' perceptions of the challenges of patient engagement in a cardiovascular research network.

BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers’ perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients’ roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.

Reflections on patient involvement in research and clinical practice: A secondary analysis of women's perceptions and experiences of egg aspiration in fertility treatment.

The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During the analysis, it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals.

Milestones, barriers and beacons: Shared decision making in Canada inches ahead

Canada's approach to shared decision making (SDM) remains as disparate as its healthcare system; a conglomerate of 14 public plans – ten provincial, three territorial and one federal. The healthcare research funding environment has been largely positive for SDM because there was funding for knowledge translation research which also encompassed SDM. The funding climate currently places new emphasis on patient involvement in research and on patient empowerment in healthcare. SDM fields have expanded from primary care to elder care, paediatrics, emergency and critical care medicine, cardiology, nutrition, occupational therapy and workplace rehabilitation. Also, SDM has reached out to embrace other health-related decisions including about home care and social care and has been adapted to Aboriginal decision making needs. Canadian researchers have developed new interprofessional SDM models that are being used worldwide. Professional interest in SDM in Canada is not yet widespread, but there are provincial initiatives in Alberta, British Columbia, Ontario, Quebec and Saskatchewan. Decision aids are routinely used in some areas, for example for prostate cancer in Saskatchewan, and many others are available for online consultation. The Patient Decision Aids Research Group in Ottawa, Ontario maintains an international inventory of decision aids appraised with the International Patient Decision Aid Standards. The Canada Research Chair in SDM and Knowledge Translation in Quebec City maintains a website of SDM training programs available worldwide. These initiatives are positive, but the future of SDM in Canada depends on whether health policies, health professionals and the public culture fully embrace it.

Patients' motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe.

Plain English summaryPlain English summaryPLM is an online platform that provides tools for individuals to track their health and connect with other patients and while PLM has invited patients to participate in various research projects throughout the years, an examination into what motivates patients to want to get involved in clinical research has not been done. During our analysis of applications submitted by members of the PLM community, we looked for reasons patients want to participate in research and their overall beliefs about clinical research, in general. In addition, we analyzed obstacles and barriers toward patients’ research participation. We observed the following:Patients are typically motivated by their individual needs and are most interested in research specific to their own condition.To get the most from patients’ involvement and to enhance patients’ contribution towards research goals, researchers should explain the research goal and requirements of each goal in clear and transparent terms, making it easy for patients to understand, thus avoiding any potential miscommunication.Future studies are needed to determine the best methods for involving patients in clinical research.BackgroundHistorically, throughout the clinical and medical research arenas, patients have been perceived as passive “subjects” rather than as individuals who may have thoughts regarding research development, research plans, implementation of research studies, and data analysis. However, it is becoming more clear that patients increasingly want to have a more active role in clinical research studies and in the management of their own medical conditions as evidenced by a “no decision about us without us” stance, meaning patients want to make informed decisions about their health while working alongside their healthcare professionals. The central aim of this research study was to determine patients’ motivations for being involved in research design and understand their perceptions of current research practices.MethodsTwo independent qualitative studies were conducted. In Study 1, we analyzed applications submitted by self-identified patients from within the PatientsLikeMe (PLM) community, for acceptance onto our advisory panel. The advisory panel was tasked with developing a best practice guide for how to involve patients in research. During the qualitative analysis, we identified major reasons for and topics of interest associated with PLM members’ motivation to apply to the advisory panel. In Study 2, we analyzed applications from PLM community members and from patients outside the PLM community for a patient-led patient-reported-outcome (PRO) development project. Similar to Study 1, we identified themes associated with patients’ motivations to participate in developing a new PRO.ResultsPLM members are interested in being involved in medical research for various reasons, including facilitating provider-patient communication, improving comprehension of medical information, understanding their disease, and bringing a more individualized approach to health care in general.ConclusionChallenges in the process of appropriate involvement of patients in research are discussed. In both studies, the applicants shared their interests in being involved in research. However, in Study 2, many of the patients shared ideas that were not appropriate for the development of a PRO, which indicated limitations in how the invitation and application explained the project to patients. Future studies should contribute to determining the most appropriate method for involving patients in various settings.

Process and impact of patient involvement in a systematic review of shared decision making in primary care consultations.

BackgroundPatient and public involvement and engagement (PPIE) in systematic reviews remains uncommon, despite the policy imperative for patient involvement in research. The aim of this study was to investigate the process and impact of collaborating with members of a patient Research User Group (RUG) on a systematic review about shared decision making around prescribing analgesia in primary care consultations.MethodsFive members of an established patient RUG collaborated with researchers undertaking a systematic review with narrative synthesis, through workshops held at three time‐points. These addressed the following: designing the protocol, interpreting the results and planning dissemination. Support from a RUG coordinator and user support worker facilitated collaboration throughout the review process. Researchers reflected on how PPIE modified the review at each time‐point.ResultsRUG members identified factors important in shared decision making around analgesic prescribing additional to those initially proposed by the research team. Search terms and specific outcomes of interest were amended to reflect these additional factors. Thirty of the 39 patient‐identified factors were absent in the published literature. The categories of factors identified were used as a framework for the narrative synthesis and for reporting results. RUG members prioritized options for disseminating the results.ConclusionPPIE collaboration throughout the systematic review impacted on the scope of the review, highlighting gaps in the literature that were important to patients. Impact on interpretation and dissemination of findings ensured the review directly reflected patient priorities. Challenges and strategies to facilitate PPIE involvement in systematic reviews and suggestions for future researchers are highlighted.

Researching Complex Interventions in Health: The State of the Art : Exeter, UK. 14-15 October 2015.

Table of contentsKEYNOTE PRESENTATIONSK1 Researching complex interventions: the need for robust approachesPeter CraigK2 Complex intervention studies: an important step in developing knowledge for practiceIngalill Rahm-HallbergK3 Public and patient involvement in research: what, why and how?Nicky BrittenK4 Mixed methods in health service research – where do we go from here?Gunilla BorglinSPEAKER PRESENTATIONSS1 Exploring complexity in systematic reviews of complex interventionsGabriele Meyer, Sascha Köpke, Jane Noyes, Jackie ChandlerS2 Can complex health interventions be optimised before moving to a definitive RCT? Strategies and methods currently in useSara LevatiS3 A systematic approach to develop theory based implementation interventionsAnne SalesS4 Pilot studies and feasibility studies for complex interventions: an introductionLehana Thabane, Lora GiangregorioS5 What can be done to pilot complex interventions?Nancy Feeley, Sylvie CossetteS6 Using feasibility and pilot trials to test alternative methodologies and methodological procedures prior to full scale trialsRod TaylorS7 A mixed methods feasibility study in practiceJacqueline Hill, David A Richards, Willem KuykenS8 Non-standard experimental designs and preference designsLouise von EssenS9 Evaluation gone wild: using natural experimental approaches to evaluate complex interventionsAndrew WilliamsS10 The stepped wedge cluster randomised trial: an opportunity to increase the quality of evaluations of service delivery and public policy interventionsKarla Hemming, Richard Lilford, Alan Girling, Monica TaljaardS11 Adaptive designs in confirmatory clinical trials: opportunities in investigating complex interventionsMunyaradzi DimairoS12 Processes, contexts and outcomes in complex interventions, and the implications for evaluationMark PetticrewS13 Processes, contexts and outcomes in complex interventions, and the implications for evaluationJanis Baird, Graham MooreS14 Qualitative evaluation alongside RCTs: what to consider to get relevant and valuable resultsWillem Odendaal, Salla Atkins, Elizabeth Lutge, Natalie Leon, Simon LewinS15 Using economic evaluations to understand the value of complex interventions: when maximising health status is not sufficientKatherine PayneS16 How to arrive at an implementation planTheo van AchterbergS17 Modelling process and outcomes in complex interventionsWalter SermeusS18 Systems modelling for improving health careMartin Pitt, Thomas Monks

The need for patient-centred clinical research in idiopathic pulmonary fibrosis.

Patient-centredness is an accepted term and is perceived by healthcare professionals to be morally and ethically desirable. We are motivated by the belief that this approach will improve the patient-professional experience of the decision-making process and improve health outcomes. We acknowledge that patients, either as participants or as co-investigators, have positive contributions to make to research. As the idiopathic pulmonary fibrosis (IPF) community enters a new era of clinical research activity we consider that there is greater capacity for patient involvement and partnership.Patient involvement in research can be optimised through collaborations in the research design, study conduct, and dissemination. There is increasing interest in using patient- reported outcomes (PROs), such as health-related quality of life, and symptoms measures to inform decision-making and ensure patient perspectives are taken into account. PROs are an essential component of specialist IPF services, to monitor and improve care delivery and to measure and benchmark performance. In clinical trials, PROs can additionally be used to define entry criteria, evaluate efficacy of an intervention, and evaluate adverse events. We suggest that there is a much wider scope for including patient-centred PROs in clinical research and for creative thought in developing patient co-investigator roles.Participation in research activity requires highly refined decision-making processes, particularly in a condition such as IPF, which has an often unpredictable trajectory. The IPF research landscape has changed and the design and conduct of clinical trials in IPF requires some radical rethinking. It is accepted that involving patients in the role of co-investigators will impact the research questions we ask and result in study designs that are patient-centred. IPF clinical trials have been hindered by the lack of availability of validated, disease-specific questionnaires. A conservative approach appears to have been taken to the inclusion of generic symptom or quality of life measures as PRO endpoints. Thus, the impact of new drugs on the quality of life of research participants demonstrates only minimal benefit. It is time to refocus on a patient-centred approach with regards to the co-investigator role, PRO development, and research participants.

Six 'biases' against patients and carers in evidence-based medicine.

BackgroundEvidence-based medicine (EBM) is maturing from its early focus on epidemiology to embrace a wider range of disciplines and methodologies. At the heart of EBM is the patient, whose informed choices have long been recognised as paramount. However, good evidence-based care is more than choices.DiscussionWe discuss six potential ‘biases’ in EBM that may inadvertently devalue the patient and carer agenda: limited patient input to research design, low status given to experience in the hierarchy of evidence, a tendency to conflate patient-centred consulting with use of decision tools; insufficient attention to power imbalances that suppress the patient’s voice, over-emphasis on the clinical consultation, and focus on people who seek and obtain care (rather than the hidden denominator of those that do not seek or cannot access care).SummaryTo reduce these ‘biases’, EBM should embrace patient involvement in research, make more systematic use of individual (‘personally significant’) evidence, take a more interdisciplinary and humanistic view of consultations, address unequal power dynamics in healthcare encounters, support patient communities, and address the inverse care law.

Application of a tool for the evaluation of public and patient involvement in research

ObjectivesPublic and patient involvement (PPI) is required at all stages of research by many funding bodies such as the National Institute for Health Research (NIHR). Given the high priority of...