Research in general practice: a survey of incentives and disincentives for research participation

Background Recruitment rates of general practitioners (GPs) to do research vary widely. This may be related to the ability of a study to incorporate incentives for GPs and minimise barriers to participation.Method A convenience sample of 30 GPs, ten each from the Sydney intervention and control groups Ageing in General Practice ‘Detection and Management of Dementia’ project (GP project) and 10 GPs who had refused participation, were recruited to determine incentives and barriers to participating in research. GPs completed the 11-item ‘Meeting the challenges of research in general practice: general practitioner questionnaire’ (GP survey) between months 15 and 24 of the GP project, and received brief qualitative interviews from a research GP to clarify responses where possible.Results The most important incentives the 30 GPs gave for participating in the project were a desire to update knowledge (endorsed by 70%), to help patients (70%), and altruism (60%). Lack of time (43%) was the main barrier. GPs also commented on excessive paperwork and an inadequate explanation of research.Conclusions While a desire to update knowledge and help patients as well as altruism were incentives, time burden was the primary barrier and was likely related to extensive paperwork. Future recruitment may be improved by minimising time burden, making studies simpler with online data entry, offering remuneration and using a GP recruiter.     

The use of infants in drug research when there is no direct benefit to them: a survey of Canadian health care professionals serving on ethics committees.

Canadian health care professionals and lawyers serving on ethics committees were questioned about their views on pharmacokinetic research in newborn infants who are not likely to benefit directly from the results. Of the 50 respondents 13 felt that blood samples should be taken only for therapeutic reasons; 10 of the 13 argued that additional blood samples should not be taken, because there is no direct benefit to the infant; and 8 felt that proxy consent cannot be given for invasive nontherapeutic research. Four of the five participating lawyers would not permit additional blood samples to be taken. Of the 37 respondents who would permit additional blood samples to be taken, 27 felt that the number of samples taken should depend on the researcher''s justification for that number of samples; only 7 of the respondents had a clear idea of what the "upper limit" of the number of blood samples should be.     

Nurse practitioners in primary care I. The McMaster University educational program

In 1971 McMaster University offered an educational program for nurse practitioners sponsored jointly by the Faculty of Medicine and the School of Nursing. Priority in the pilot program was given to nurses employed in family practice settings and to those participating in related McMaster studies. Because of the implications of a change in role for both nurse and physician, one requirement for acceptance of a nurse in the program was participation of the physician-associate in the educational program.The program prepares registered nurses to extend their responsibilities in primary health care activities for the assessment and management of patients in family practice. The current evaluations of the pilot-study results suggest that such programs can contribute effective resources towards meeting expectations of ready access to primary care by the people of Canada.     

Would primary health care workers give appropriate dietary advice after cholesterol screening?

The purpose of this study was to obtain information on the dietary knowledge of primary health care workers and on their ability to apply this knowledge in practice. A total of 128 primary health care workers (53 general practitioners and 61 nurses) in 12 practices and 14 primary care facilitators were surveyed by questionnaire between December 1987 and June 1988. All of the practices were participating in a project to promote prevention in primary care and offered health checks designed to identify and deal with cardiovascular risk factors. The questionnaire focused on issues related to managing patients with moderate hypercholesterolaemia. The results of the study showed some important gaps in the health workers'' knowledge--for example, only 91 understood that dietary intake of polyunsaturated fatty acids as a proportion of total fat intake should be increased in a diet designed to reduce serum lipid concentrations. Appreciable gaps in their ability to give practical and appropriate dietary advice were also identified: 35 gave advice that would have led to the patient losing weight (although his history indicated that he was not overweight), and 27 gave only negative advice, offering no suggestions about substituting healthy foods for unhealthy ones. The demand for primary health care workers to give dietary advice is increasing and is likely to increase further if a national screening programme for hypercholesterolaemia is recommended. The results of this survey point to a need for improved nutritional education and training in dietary counselling for general practitioners, nurses, and primary care facilitators.     

Sources and patterns of referrals of oral cancer: role of general practitioners.

Referrals of patients with oral squamous cell carcinomas to an oral medicine clinic were assessed with regard to the sources, delays, and pattern of referrals from general medical practitioners and general dental practitioners. Slightly more patients were referred by dental practitioners than by medical practitioners, but general medical practitioners were far more likely to see advanced tumours and to request an urgent second opinion or suggest a diagnosis of malignant disease. The greatest delay overall was caused by the patients in seeking advice from their practitioner, particularly those who attended a general medical practitioner. Both groups of practitioners requested a hospital opinion within roughly a month--a reasonable interval. Subsequent delays were minimal. Delays occur mainly because the patients are slow in seeking professional advice and, in general, do not appear to have been reduced over the decade since a previous British study on referral patterns was carried out. This study emphasises the importance of educating patients about oral cancer since it is they who appear to be mainly responsible for the delays in diagnosis. The results also help to dispel the myth that general medical practitioners might be less competent at diagnosis and referral of patients with oral cancer than are dental practitioners, though we are aware of misdiagnoses from both groups.     

Parents’ Agendas in Paediatric Clinical Trial Recruitment Are Different from Researchers’ and Often Remain Unvoiced: A Qualitative Study

Ensuring parents make an informed decision about their child’s participation in a clinical trial is a challenge for practitioners as a parent’s comprehension of a trial may differ from that intended by the practitioners responsible for recruitment. We explored what issues parents consider important when making a decision about participation in a paediatric clinical trial and their comprehension of these issues to inform future recruitment practice. This qualitative interview and observational study examined recruitment in four placebo-controlled, double-blind randomised clinical trials of medicines for children. Audio-recorded trial recruitment discussions between practitioners and parents (N = 41) were matched with semi-structured interviews with parents (N = 41). When making a decision about trial entry parents considered clinical benefit, child safety, practicalities of participation, research for the common good, access to medication and randomisation. Within these prioritised issues parents had specific misunderstandings, which had the potential to influence their decisions. While parents had many questions and concerns about trial participation which influenced their decision-making, they rarely voiced these during discussions about the trials with practitioners. Those involved in the recruitment of children to clinical trials need to be aware of parents’ priorities and the sorts of misunderstandings that can arise with parents. Providing trial information that is tailored to what parents consider important in making a decision about a clinical trial may improve recruitment practice and ultimately benefit evidence-based paediatric medicine.     

Bioethics for clinicians: 10. Research ethics

Medical research involving human subjects raises complex ethical, legal and social issues. Investigators sometimes find that their obligations with respect to a research project come into conflict with their obligations to individual patients. The ethical conduct of research rests on 3 guiding principles: respect for persons, beneficience, and justice. Respect for persons underlies the duty to obtain informed consent from study participants. Beneficence demands a favourable balance between the potential benefits and harms of participation. Justice requires that vulnerable people not be exploited and that eligible candidates who may benefit from participation not be excluded without good cause. Studies must be designed in a way that ensures the validity of findings and must address questions of sufficient importance to justify the risks of participation. In any clinical trial there must be genuine uncertainty as to which treatment arm offers the most benefit, and placebo controls should not be used if effective standard therapies exist. Researchers have a responsibility to inform themselves about the ethical, legal and policy standards that govern their activities. When difficulties arise, they should consult the existing literature and seek the advice of experts in research ethics.     

"My parents decide if I can. I decide if I want to." Children's views on participation in medical research

The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10-12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies.     

Geriatrisch spreekuur door een specialist ouderengeneeskunde in de huisartspraktijk

An innovative project is presented, in which general practitioners, an elderly care physician and specialized nurses work together. The primary aim of the project was early detecting of frail community dwelling elderly and to give them adequate treatment and support, to enable them to stay in their own home situation as long as possible. The detection of frail elderly was performed by mean of the Easycare instrument. Results collected from October 2007 - July 2009 are presented in this article. The findings show that particularly elderly with symptoms of dementia have been detected. The main actions were provision of integrated psychogeriatric care according to a tailormade integral care plan and starting or extending home care. Elderly with somatic problems were seen mostly in one time consultations. The satisfaction about the care provided in the project was high, both for participating patients and professionals. In the pilot a tendency was also found towards fewer referrals to hospital (specialists) and towards a reduction of the number of acute admissions to the nursing home.     

Measuring outcomes in primary care: a patient generated measure,MYMOP, compared with the SF-36 health survey.

OBJECTIVE--To assess the sensitivity to within person change over time of an outcome measure for practitioners in primary care that is applicable to a wide range of illness. DESIGN--Comparison of a new patient generated instrument, the measure yourself medical outcome profile (MYMOP), with the SF-36 health profile and a five point change score; all scales were completed during the consultation with'' practitioners and repeated after four weeks. 103 patients were followed up for 16 weeks and their results charted; seven practitioners were interviewed. SETTING--Established practice of the four NHS general practitioners and four of the private complementary practitioners working in one medical centre. SUBJECTS--Systematic sample of 218 patients from general practice and all 47 patients of complementary practitioners; patients had had symptoms for more than seven days. OUTCOME MEASURES--Standardised response mean and index of responsiveness; view of practitioners. RESULTS--The index of responsiveness, relating to the minimal clinically important difference, was high for MYMOP: 1.4 for the first symptom, 1.33 for activity, and 0.85 for the profile compared with < 0.45 for SF-36. MYMOP''s validity was supported by significant correlation between the change score and the change in the MYMOP score and the ability of this instrument to detect more improvement in acute than in chronic conditions. Practitioners found that MYMOP was practical and applicable to all patients with symptoms and that its use increased their awareness of patients'' priorities. CONCLUSION--MYMOP shows promise as an outcome measure for primary care and for complementary treatment. It is more sensitive to change than the SF-36 and has the added bonus of improving patient-practitioner communication.     

Communication about Children's Clinical Trials as Observed and Experienced: Qualitative Study of Parents and Practitioners

Background

Recruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials.

Methods and Findings

This qualitative study ran alongside four children''s clinical trials in 11 UK research sites. It compared analyses of semi-structured interviews with analyses of audio-recordings of practitioner-family dialogue during trial recruitment discussions. Parents from 59 families were interviewed; 41 had participated in audio-recorded recruitment discussions. 31 practitioners were interviewed. Parents said little in the recruitment discussions contributing a median 16% of the total dialogue and asking a median of one question. Despite this, parents reported a positive experience of the trial approach describing a sense of comfort and safety. Even if they declined or if the discussion took place at a difficult time, parents understood the need to approach them and spoke of the value of research. Some parents viewed participation as an ‘exciting’ opportunity. By contrast, practitioners often worried that approaching families about research burdened families. Some practitioners implied that recruiting to clinical trials was something which they found aversive. Many were also concerned about the amount of information they had to provide and believed this overwhelmed families. Whilst some practitioners thought the trial information leaflets were of little use to families, parents reported that they used and valued the leaflets. However, both parties agreed that the leaflets were too long and wanted them to be more reader-friendly.

Conclusions

Parents were more positive about being approached to enter their child into a clinical trial than practitioners anticipated. The concerns of some practitioners, that parents would be overburdened, were unfounded. Educating practitioners about how families perceive clinical trials and providing them with ‘moral’ support in approaching families may benefit paediatric research and, ultimately, patients.     

Benefits of appraisal as perceived by general practitioners

Appraisal for general practitioners (GPs) has been in place since 2002. We conducted a review of current literature on what benefits GPs perceived appraisal to offer. GPs recognised that appraisal offers the chance to reflect on their personal development, and promotes educational activity. Furthermore, there is a strong perception that appraisal encourages changes in clinical practice and offers additional benefits such as mentorship and motivational support for the doctor. The conclusion we draw is that GPs, and the patients that they treat, should continue to benefit from outputs of medical appraisal after the introduction of medical revalidation.     

General practitioner and specialist views on colonoscopic screening of first-degree relatives of colorectal cancer patients

Introduction: Barriers to targeted colonoscopic screening of first-degree relatives of colorectal cancer patients have been the subject of considerable literature, always as seen from the patient's viewpoint. In the specific context of screening individuals with a family history, physicians may also play a predominant role in motivating their colorectal cancer patients to pass on screening information to their relatives. The aim of this study was to examine the views of general practitioners and specialists regarding barriers and facilitators affecting participation of relatives in colonoscopic screening. Methods: A qualitative study was conducted to collect and analyse information from two focus groups of 4 general practitioners and 9 gastroenterologists respectively, and from semi-structured individual interviews with 10 general practitioners, 2 surgeons and 3 oncologists. An extended focus group of 36 gastroenterologists was organized to validate the results. Results: The main barriers to colonoscopic screening of FDRs were associated with lack of direct communication between physicians and FDRs. Physicians needed support in the task of informing index patients and persuading them to transfer information on screening to their FDRs. The general practitioners spoke of their expectations in terms of training in and motivation for promoting screening and the gastroenterologists expressed the wish for patient education material specific to colonoscopy and for systematic post-colonoscopy consultations to inform patients about their results, follow-up and screening their relatives. Conclusion: The findings, notably the need for specific education materials and for training to improve the motivation of physicians, will help to develop effective interventions intended to increase participation in screening.     

Restoring Rivers One Reach at a Time: Results from a Survey of U.S. River Restoration Practitioners

Despite expenditures of more than 1 billion dollars annually, there is little information available about project motivations, actions, and results for the vast majority of river restoration efforts. We performed confidential telephone interviews with 317 restoration project managers from across the United States with the goals of (1) assessing project motivations and the metrics of project evaluation and (2) estimating the proportion of projects that set and meet criteria for ecologically successful river restoration projects. According to project managers, ecological degradation typically motivated restoration projects, but post‐project appearance and positive public opinion were the most commonly used metrics of success. Less than half of all projects set measurable objectives for their projects, but nearly two‐thirds of all interviewees felt that their projects had been “completely successful.” Projects that we classified as highly effective were distinct from the full database in that most had significant community involvement and an advisory committee. Interviews revealed that many restoration practitioners are frustrated by the lack of funding for and emphasis on project monitoring. To remedy this, we recommend a national program of strategic monitoring focused on a subset of future projects. Our interviews also suggest that merely conducting and publishing more scientific studies will not lead to significant improvements in restoration practice; direct, collaborative involvement between scientists, managers, and practitioners is required for forward progress in the science and application of river restoration.     

Drivers and socioeconomic impacts of tourism participation in protected areas

Nature-based tourism has the potential to enhance global biodiversity conservation by providing alternative livelihood strategies for local people, which may alleviate poverty in and around protected areas. Despite the popularity of the concept of nature-based tourism as an integrated conservation and development tool, empirical research on its actual socioeconomic benefits, on the distributional pattern of these benefits, and on its direct driving factors is lacking, because relevant long-term data are rarely available. In a multi-year study in Wolong Nature Reserve, China, we followed a representative sample of 220 local households from 1999 to 2007 to investigate the diverse benefits that these households received from recent development of nature-based tourism in the area. Within eight years, the number of households directly participating in tourism activities increased from nine to sixty. In addition, about two-thirds of the other households received indirect financial benefits from tourism. We constructed an empirical household economic model to identify the factors that led to household-level participation in tourism. The results reveal the effects of local households' livelihood assets (i.e., financial, human, natural, physical, and social capitals) on the likelihood to participate directly in tourism. In general, households with greater financial (e.g., income), physical (e.g., access to key tourism sites), human (e.g., education), and social (e.g., kinship with local government officials) capitals and less natural capital (e.g., cropland) were more likely to participate in tourism activities. We found that residents in households participating in tourism tended to perceive more non-financial benefits in addition to more negative environmental impacts of tourism compared with households not participating in tourism. These findings suggest that socioeconomic impact analysis and change monitoring should be included in nature-based tourism management systems for long-term sustainability of protected areas.     

Opinions of medical students on the pre-graduate scientific activities--how to improve the situation?

BACKGROUND: The number of medical undergraduates taking part in Student Scientific Activities (SSA) at Jessenius Faculty of Medicine Comenius University in Slovakia remains low. The aim of this study was to discover some of the factors responsible and suggest improvements. METHODS: An anonymous 30-item questionnaire was devised and sent to 245 medical undergraduates (UG) of the 1st, 2nd, 3rd and 5th years. RESULTS: Foreign fellowships, postgraduate research, assistant posts at universities and financial incentives were cited as the main positive motivators for participation in UG student scientific research. Characteristics in tutors that encouraged student research were scientific knowledge, giving time to students and enthusiasm for research while poor infrastructure, tutor lack of time/interest, own time constraints, weak career motivation and lack of information were the strongest discouraging factors. CONCLUSION: Involvement of students in SSA is influenced by many factors. To increase the number of students taking part in SSA, student research and/or continuing to Ph.D and scientific career, these factors need to be addressed by medical schools.     

Public Opinion about the Importance of Privacy in Biobank Research

Concerns about privacy may deter people from participating in genetic research. Recruitment and retention of biobank participants requires understanding the nature and magnitude of these concerns. Potential participants in a proposed biobank were asked about their willingness to participate, their privacy concerns, informed consent, and data sharing. A representative survey of 4659 U.S. adults was conducted. Ninety percent of respondents would be concerned about privacy, 56% would be concerned about researchers having their information, and 37% would worry that study data could be used against them. However, 60% would participate in the biobank if asked. Nearly half (48%) would prefer to provide consent once for all research approved by an oversight panel, whereas 42% would prefer to provide consent for each project separately. Although 92% would allow academic researchers to use study data, 80% and 75%, respectively, would grant access to government and industry researchers. Concern about privacy was related to lower willingness to participate only when respondents were told that they would receive $50 for participation and would not receive individual research results back. Among respondents who were told that they would receive $200 or individual research results, privacy concerns were not related to willingness. Survey respondents valued both privacy and participation in biomedical research. Despite pervasive privacy concerns, 60% would participate in a biobank. Assuring research participants that their privacy will be protected to the best of researchers'' abilities may increase participants'' acceptance of consent for broad research uses of biobank data by a wide range of researchers.     

Studying phenological phenomena in subarctic biomes with international school pupils as citizen scientists

Citizen science can facilitate in‐depth learning for pupils and students, contribute to scientific research, and permit civic participation. Here, we describe the development of the transnational school‐based citizen science project Phenology of the North Calotte. Its primary goal is to introduce pupils (age 12–15; grades 7–10) in northern Norway, Russia, and Finland to the local and global challenges of climate change resulting in life cycle changes at different trophic and ecosystem levels in their backyards. Partnerships between regional scientists and staff from NIBIO Svanhovd, State nature reserves, national parks, and teachers and pupils from regional schools aim to engage pupils in project‐based learning. The project uses standardized protocols, translated into the different languages of participating schools. The phenological observations are centered around documenting clearly defined life cycle phases (e.g., first appearance of species, flowering, ripening, leaf yellowing, snow fall, and melt). The observations are collected either on paper and are subsequently submitted manually to an open‐source online database or submitted directly via a newly developed mobile app. In the long term, the database is anticipated to contribute to research studying changes in phenology at different trophic levels. In principle, guided school‐based citizen science projects have the potential to contribute to increased environmental awareness and education and thereby to transformative learning at the societal level while contributing to scientific progress of understudied biomes, like the northern taiga and (sub)arctic tundra. However, differences in school systems and funding insecurity for some schools have been major prohibiting factors for long‐term retention of pupils/schools in the program. Project‐based and multidisciplinary learning, although pedagogically desired, has been partially difficult to implement in participating schools, pointing to the need of structural changes in national school curricula and funding schemes as well as continuous offers for training and networking for teachers.     

Incidental Sanctions and the Evolution of Direct Benefits

Recent research has shown that a variety of traits that increase male success in mating and sperm competition can impose costs on females, resulting in antagonistic coevolution between the sexes. Yet, in many animals, females are known to receive direct benefit from their mates, including many in which female multiple mating results in intense sperm competition among males. The most common explanation for the evolution of male‐provided direct benefits is pre‐mating female choice based on benefit quality. This explanation is insufficient, however, for those direct benefits that females cannot directly assess prior to mating. Given that intrasexual selection will often favor male traits that increase female mating costs, many types of direct benefits can thus be difficult to explain. In this paper, we review four additional hypotheses for the evolution of male‐provided direct benefits, and present a fifth hypothesis that has received little attention. This latter hypothesis proposes that selection often favors female reproductive tactics that are conditional upon the past costs and benefits of mating. These conditional female reproductive tactics should evolve because the quality of the benefit provided by a previous mate can change the costs and benefits of alternative reproductive decisions. Furthermore, many of the conditional reproductive tactics we might expect females to express should incidentally penalize males which provide lower quality direct benefits. These conditional reproductive tactics may thus play an important role in determining whether females incur costs or receive benefits from their mates. In addition to favoring the evolution of direct benefits, we argue that conditional female reproductive tactics may also favor reliable signaling of benefit quality. The most common explanation for reliable signaling is the handicap mechanism, which proposes that differential costs of signaling prevent low quality males from deceptively producing attractive signals. For direct benefits, however, there is a second type of deception: males which produce attractive signals and can afford to provide high quality direct benefits may choose to cheat on the advertised benefit. The handicap mechanism does nothing to prevent cheating on direct benefits by males which can afford to produce attractive signals, and is thus insufficient for ensuring reliable signaling of benefit quality. In contrast, conditional female reproductive tactics that incidentally penalize low benefit males should also penalize males which cheat on the benefits advertised by their signals.     

Hypotheses in urban ecology: building a common knowledge base

Urban ecology is a rapidly growing research field that has to keep pace with the pressing need to tackle the sustainability crisis. As an inherently multi-disciplinary field with close ties to practitioners and administrators, research synthesis and knowledge transfer between those different stakeholders is crucial. Knowledge maps can enhance knowledge transfer and provide orientation to researchers as well as practitioners. A promising option for developing such knowledge maps is to create hypothesis networks, which structure existing hypotheses and aggregate them according to topics and research aims. Combining expert knowledge with information from the literature, we here identify 62 research hypotheses used in urban ecology and link them in such a network. Our network clusters hypotheses into four distinct themes: (i) Urban species traits & evolution, (ii) Urban biotic communities, (iii) Urban habitats and (iv) Urban ecosystems. We discuss the potentials and limitations of this approach. All information is openly provided as part of an extendable Wikidata project, and we invite researchers, practitioners and others interested in urban ecology to contribute additional hypotheses, as well as comment and add to the existing ones. The hypothesis network and Wikidata project form a first step towards a knowledge base for urban ecology, which can be expanded and curated to benefit both practitioners and researchers.