Health Promotion Research Research Articles

Virtual Photovoice With Older Adults: Methodological Reflections during the COVID-19 Pandemic

Photovoice is a participatory action research method in which participants take and narrate photographs to share their experiences and perspectives. This method is gaining in popularity among health researchers. Few studies, however, have described virtual photovoice data collection despite the growing interest among qualitative health researchers for online data collection. As such, the aim of this article is to discuss the implementation of a virtual photovoice study and presents some of the challenges of this design and potential solutions. The study examined issues of social isolation and mental health among older adults during the COVID-19 pandemic in the Canadian province of Québec. Twenty-six older adults took photographs depicting their experience of the pandemic that were then shared in virtual discussion groups. In this article, we discuss three key challenges arising from our study and how we navigated them. First, we offer insights into managing some of the technical difficulties related to using online meeting technologies. Second, we describe the adjustments we made during our study to foster and maintain positive group dynamics. Third, we share our insights into the process of building and maintaining trust between both researchers and participants, and amongst participants. Through a discussion of these challenges, we offer suggestions to guide the work of health promotion researchers wishing to conduct virtual photovoice studies, including with older adults.

Connecting Implementation Science, Community-Engaged Research, and Health Promotion to Address Cancer Inequities in Massachusetts: The UMB/DF-HCC U54 Outreach Core.

The Outreach Core of the U54 Partnership between the Dana-Farber/Harvard Cancer Center and the University of Massachusetts Boston created a new model for addressing cancer inequities that integrates implementation science, community-engaged research, and health promotion. Key elements of the approach include engaging a Community Advisory Board, supporting students from underrepresented minority backgrounds to conduct health promotion and community-engaged research, increasing the delivery of evidence-based cancer prevention programs to underserved communities (directly and by training local organizations), supporting research-practice partnerships, and disseminating findings. Our model highlights the need for long-term investments to connect underserved communities with evidence-based cancer prevention.

Peer support interventions for parents and carers of children with complex needs.

Peer support interventions for parents and carers of children with complex needs.

Engaging African American Pastors in COVID-19 Research During a Pandemic: Lessons Learned

African American pastors are recognized as trusted information sources for their communities. The pastors willing to address health-related concerns such as preventing the spread of the coronavirus are invaluable for leading their congregation through relevant health programs. Underlining the importance of religion, spirituality, and faith-based leaders in addressing and furthering health promotion research, the article discusses lessons learned during the study implementation and the recommendations for engaging minority pastors in research during a global health pandemic.

A Rapid Realist Review of Effective Mental Health Interventions for Individuals with Chronic Physical Health Conditions during the COVID-19 Pandemic Using a Systems-Level Mental Health Promotion Framework.

The 2020 global outbreak of COVID-19 exposed and heightened threats to mental health across societies. Research has indicated that individuals with chronic physical health conditions are at high risk for suffering from severe COVID-19 illness and from the adverse consequences of public health responses to COVID-19, such as social isolation. This paper reports on the findings of a rapid realist review conducted alongside a scoping review to explore contextual factors and underlying mechanisms or drivers associated with effective mental health interventions within and across macro–meso–micro systems levels for individuals with chronic physical health conditions. This rapid realist review extracted 14 qualified studies across 11 countries and identified four key mechanisms from COVID-19 literature—trust, social connectedness, accountability, and resilience. These mechanisms are discussed in relation to contextual factors and outcomes reported in the COVID literature. Realist reviews include iterative searches to refine their program theories and context–mechanism–outcome explanations. A purposive search of pre-COVID realist reviews on the study topic was undertaken, looking for evidence of the robustness of these mechanisms. There were differences in some of the pre-COVID mechanisms due to contextual factors. Importantly, an additional mechanism—power-sharing—was highlighted in the pre-COVID literature, but absent in the COVID literature. Pre-existing realist reviews were used to identify potential substantive theories and models associated with key mechanisms. Based on the overall findings, implications are provided for mental health promotion policy, practice, and research.

Effective and resource efficient strategies for recruiting families in physical activity, sedentary behaviour, nutrition, and obesity prevention research: A systematic review with expert opinion

Background: The recruitment of participants into intervention research has been notoriously difficult for research teams around the world, where many researchers fail to recruit 100% of their target sample size within their pre-agreed timescale. The recruitment of families into experimental research projects is also challenging, yet there has not been a comprehensive assessment of how to recruit families to family-based health promotion research. Therefore, we systematically identified effective and resource-efficient strategies for recruiting families into health promoting intervention research. Methods: Four databases were searched for published reviews. Intervention studies were extracted from included reviews. Subsequently, a Delphi study was conducted with 35 experts in relevant family-based research. We assessed extracted data from our review and Delphi participants’ opinions by collating responses into overarching themes based on recruitment setting and recruitment strategies to identify effective and resource-efficient strategies for recruiting families into intervention research. Results: A total of 64 articles (n = 49 studies) were included. Data regarding recruitment duration (33%), target sample size (32%), reach (18%), expressions of interest (33%), and enrolment rate (22%) were scarcely reported. Recruitment settings (84%) and strategies (73%) used were available for most studies. However, the details were vague, particularly regarding who was responsible for recruitment or how recruitment strategies were implemented. The Delphi showed recruitment settings and strategies fell under 6 themes: school-based, print/electronic media, community settings-based, primary care-based, employer-based, and referral-based strategies. The most common recruitment setting was in schools and the most common recruitment strategies were passive strategies (e.g., sending letters). Of the Delphi participants, 62% reported under-recruitment in their most recent family-based experimental study. Discussion: Under-recruitment in family-based trials is a major issue. Moreover, most studies applied similar recruitment strategies, predominantly through schools, despite known challenges of recruiting in schools. Our findings suggest that researchers should employ a multifaceted recruitment approach that targets adults and children and provides potential participants with repeated exposure to study information. Reporting on recruitment can also be improved by better adherence to existing guidelines. Improved reporting around effectiveness of recruitment will give future researchers the ability to better budget their time, resources, and provide greater confidence in meeting their target sample size. Future research should investigate the estimated cost of recruiting families into trials; as well as more sophisticated and innovative research strategies (e.g., consulting experts in data science, marketing, advertising, graphic design, social media). Conflict of interest: We have no conflicts of interest to declare.

Health promotion research has come of age! Structuring the field based on the practices of health promotion researchers.

Health promotion is mostly framed as a discourse and practices based on a set of values and principles that promote changes at various levels (individual, community and global). There is no well-defined knowledge base and no widely agreed knowledge development methods. During the past decades, health promotion knowledge has developed following a potluck model. Researchers from various disciplinary backgrounds attracted to the values and transformative vision of health promotion have used their disciplinary-based research methods and theories to conduct studies about the various practices that are associated with health promotion. Although health promotion research has acquired many attributes of a distinct field, researching practices from various disciplinary perspectives is not sufficient to create a coherent knowledge base for health promotion. We propose three dimensions to further structure health promotion research. The first relates to the object for which knowledge is produced. For health promotion research this relates to health social practices. The second dimension relates to the purpose and ethics of research. In the case of health promotion research it pursues the dual purpose of producing knowledge (epistemic aim) and contributing to social changes (transformative aim). The third dimension concerns the knowledge produced and the conditions for valid knowledge. In the case of health promotion research, the condition of knowledge production should include a recognition of the complexity of social practice and the necessary dialogue between scientific. True to health promotion principles, we propose a bottom-up process for structuring the field through the creation of a 'Global Handbook of Health Promotion Research' that would draw on the research practices of those involved in health promotion research.

Health promotion research in the Nordic countries - a scoping review of PhD dissertations 2008-2018

Abstract Background The Nordic countries are welfare states that also have been claimed to be in the forefront in developing health promotion, in relation to theory, research, policy and practice. This scoping review was performed by members of the Nordic Health Promotion Research Network with the objectives to collect and identify the scope and theoretical basis of doctoral (PhD) dissertations on health promotion in a Nordic context. Methods Searches for dissertations, published 2008-2018, were performed in several databases in Denmark, Finland, Iceland, Norway, and Sweden. Those labelled “health promotion” present in titles, abstract or key words were included in the scoping review. Data was extracted based on a common template including title, aims, university, individual-national level, setting, type of study and collaboration. Results The search strategy had to be modified to include manual searches at university sites as no national data base was available. In total, 353 health promotion dissertations had been published at 41 different universities. Most dissertations were Swedish (193), while 56 came from Denmark, 53 from Norway and 51 from Finland, but non from Iceland. The main content was lifestyle (28%), mental or psychosocial health (14%), critical health promotion (8%), empowerment (7%) or refugee and immigrants (5%). The most common approach was settings (31%), including health care setting (14%), followed by societal (28%) and individual (28%) approaches. Mixed methods approach was most common research method (45%) followed by quantitative (32%) and qualitative methods (23%). Large country variations were seen in the health promotion. Conclusions Health promotion research in the Nordic countries can be characterised by focusing on lifestyle, settings approach, and primarily using a mixed methods approach. However, there are large variations between different health promotion PhDs, also including dissertations on critical health promotion and empowerment. Key messages Analysis of PhD dissertations can contribute to more comprehensive insight in disciplinary development. The research training will have implications for the future public health workforce. The Nordic collaboration enabled an extensive scoping review of PhD dissertations on health promotion research in the Nordic countries and shows what has characterized the field of research.

Predicting the Linguistic Accessibility of Chinese Health Translations: Machine Learning Algorithm Development.

BackgroundLinguistic accessibility has an important impact on the reception and utilization of translated health resources among multicultural and multilingual populations. Linguistic understandability of health translation has been understudied.ObjectiveOur study aimed to develop novel machine learning models for the study of the linguistic accessibility of health translations comparing Chinese translations of the World Health Organization health materials with original Chinese health resources developed by the Chinese health authorities.MethodsUsing natural language processing tools for the assessment of the readability of Chinese materials, we explored and compared the readability of Chinese health translations from the World Health Organization with original Chinese materials from the China Center for Disease Control and Prevention.ResultsA pairwise adjusted t test showed that the following 3 new machine learning models achieved statistically significant improvement over the baseline logistic regression in terms of area under the curve: C5.0 decision tree (95% CI –0.249 to –0.152; P<0.001), random forest (95% CI 0.139-0.239; P<0.001) and extreme gradient boosting tree (95% CI 0.099-0.193; P<0.001). There was, however, no significant difference between C5.0 decision tree and random forest (P=0.513). The extreme gradient boosting tree was the best model, achieving statistically significant improvement over the C5.0 model (P=0.003) and the random forest model (P=0.006) at an adjusted Bonferroni P value at 0.008.ConclusionsThe development of machine learning algorithms significantly improved the accuracy and reliability of current approaches to the evaluation of the linguistic accessibility of Chinese health information, especially Chinese health translations in relation to original health resources. Although the new algorithms developed were based on Chinese health resources, they can be adapted for other languages to advance current research in accessible health translation, communication, and promotion.

A bibliometric analysis of Health Promotion International content regarding unions, unionization and collective agreements

A recent article brought together the health benefits of unionization and working under collective agreements. It was noted how Canadian health promotion texts, reports and statements made no mention of unionization and working under collective agreements as promoting health. This was seen as a significant omission and reasons for this were considered. In this article this analysis is extended to consider how contributors to the flagship health promotion journal Health Promotion International (HPI) conceptualize unions, unionization and working under collective agreements as promoting health. Of 2443 articles published in HPI since its inception, 87 or 3.6% make mention of unions, unionization, collective agreements or collective bargaining, with most saying little about their promoting health. Instead, 20 make cursory references to unions or merely see them as providing support and engagement opportunities for individuals. Forty-five depict unions or union members as involved in a health promotion programme or activity carried out by the authors or by government agencies. Only 33 articles explicitly mention unions, unionization or collective agreements as potentially health promoting, representing 1.3% of total HPI content since 1986. We conclude that the health promoting possibilities of unionization and working under collective agreements is a neglected area amongst HPI contributors. Reasons for this are explored and an Organisation for Economic Cooperation and Development report on the importance of collective bargaining is drawn upon to identify areas for health promotion research and action.

Self-Compassion, Healthy Lifestyle Behaviors, and Psychological Well-Being in Women

Despite pressures on women to make healthy lifestyle choices and a bevy of constantly changing fitness trends and gadgets, national trends related to women’s health reflect a decline in wellness and serious health disparities based on race and socioeconomic status. Therefore, factors underlying women’s success in adopting and maintaining healthy lifestyle behaviors continue to be an essential area for research in health promotion. Previous studies have preliminarily explored the role of self-compassion in women’s health with regard to exercise and eating although less is known about how these factors contribute to overall psychological well-being. In this study, we investigated the relationships between self-compassion, engagement in healthy lifestyle behaviors, and overall psychological well-being among a sample of 340 adults from diverse backgrounds. Results supported the hypothesis that more self-compassionate women engage more frequently in healthy lifestyle behaviors and experience greater psychological well-being. Engagement in healthy lifestyle behaviors partially mediated the relationship between self-compassion and psychological well-being, such that engagement in healthy lifestyle behaviors explained a significant amount of variance in psychological well-being over and above self-compassion. Participants of underrepresented ethnic and racial groups reported higher levels of self-compassion, and higher socioeconomic status participants reported greater engagement in healthy lifestyle behaviors.

A conceptual framework for transformative gamification services

PurposeAlthough the concept of transformative gamification is mentioned in previous research, no research has provided a theoretically based explanation of how gamification can lead to transformative change. This paper aims to provide the explanation for the first time by combining storytelling elements with cognitive behavioural therapy logic and incorporating these into a framework to show the process of transformative behaviour change through gamification. The proposed framework not only furthers the theoretical understanding of transformative gamification services but also provides practical insight into design and implication of such services.Design/methodology/approachThis paper is based on critical analysis and synthesis of literature from different fields of research such as transformative service research (TSR), gamification, game studies, social marketing, storytelling and journalism. Ergo, several propositions based on the extensive literature review are proposed and aggregated in a conceptual framework.FindingsThis paper argues that apart from game mechanics that are often considered as an inseparable aspect of gamification services, immersive storytelling and a mechanism to encourage reflection are the pivotal components of transformative gamification services. In addition, this paper suggests that although reflection and immersive storytelling are often considered as opposite sides of the spectrum, they can have a synergistic effect once they work in tandem in gamification services.Originality/valueThis paper proposes a novel framework and an operational definition for transformative gamification services. It contributes to TSR, gamification and health promotion research through differentiating this concept from similar concepts, such as mHealth, propelling gamification to a more meaningful and user-centric version and providing service researchers with a practical guide to make use of gamification as a tool to serve TSR.

Psychometric Testing of the German Versions of Three Implementation Outcome Measures

Internationally comparable assessments of implementation outcomes are a prerequisite for the accurate and useful exchange of implementation science results. We translated the English versions of the acceptability of intervention measure (AIM), the intervention appropriateness measure (IAM), and the feasibility of intervention measure (FIM) into German following recent guidelines. We tested the structural validity, the internal consistency (Cronbach’s α), and the construct validity (known-groups validity) in a hypothetical situation study of secondary school teachers (n1 = 142) and the structural validity and the internal consistency in a pilot field study of primary school teachers participating in a school health promotion project (n2 = 61). The hypothesized three-factor solution (acceptability, appropriateness, and feasibility) revealed the best model fit in the hypothetical situation study (CFI = 0.97; RMSEA = 0.08). The second study tended to support these results (CFI = 0.99; RMSEA = 0.05) only when the error terms of two items from different constructs were allowed to correlate with each other (“seems like a good match” [IAM] and “seems possible” [FIM]). Furthermore, the intercorrelations between the three factors were higher in the pilot field study than in the hypothetical vignette study (0.71–0.86 vs. 0.06–0.35). The instruments’ internal consistency proved to be high in both studies (Cronbach’s α: 0.91–0.97). We gathered positive evidence for the known-groups validity, as participants who received different stimuli before answering the instruments rated them statistically significantly different. Our study showed that the German versions of the instruments could successfully be applied in health promotion research. We suggest using the four items per instrument rather than an abbreviated version and discuss recommendations for the instruments’ application.

The health literacy disparity in adolescents with sickle cell disease.

There are over 100,000 individuals with sickle cell disease (SCD) in the United States, most of whom are Black, poor, and publically insured. In combination with a chronic illness, these demographics lead to significant barriers to healthcare for patients with SCD, leaving them exceptionally vulnerable within the healthcare system. This unique vulnerability is especially notable when transitioning adolescents with SCD from pediatric to adult care, as this is a significant time of morbidity and mortality for these patients. It is postulated that health literacy influences transition from pediatric to adult care in adolescents with SCD. To better understand this relationship, more adolescent health literacy research must be conducted with both adolescents with and without SCD. Therefore, the purpose of this study is to systematically compare health literacy in adolescents with and without SCD. This is a cross-sectional, descriptive, exploratory study. One hundred and thirty-four adolescents with SCD and 105 adolescents without SCD were recruited for this study. The Newest Vital Sign (NVS) health literacy instrument was used to evaluate health literacy. Pearson correlations were conducted to evaluate relationships among health literacy and the influencing factors of age, grade level, income, and parental education level. Differences in NVS scores between groups were assessed using independent samples t tests. There was a significant relationship between health literacy, age (r = .286, p < .01) and grade level (r = .317, p = .00) in adolescents with SCD. In adolescents without SCD, there was a significant relationship between health literacy, income (r = .235; p < .05) and parental education (r = .263; p < .01). The mean NVS score was 2.66 for adolescents with SCD and 3.77 for adolescents without SCD. A statistically significant difference in NVS scores was found between groups (t = 4.772; p < .001). Adolescents with SCD demonstrated significantly lower NVS scores than adolescents without SCD. There are significant differences in health literacy scores and influencing factors in adolescents with and without SCD. Thus, this article provides unique insight for nurses as they design, implement and evaluate health promotion, patient education, and future research initiatives for adolescents and families, both with and without SCD. Further research is needed to gain more insight into this phenomenon.

Effectiveness of arts interventions to reduce mental-health-related stigma among youth: a systematic review and meta-analysis

BackgroundEducational interventions engage youth using visual, literary and performing arts to combat stigma associated with mental health problems. However, it remains unknown whether arts interventions are effective in reducing mental-health-related stigma among youth and if so, then which specific art forms, duration and stigma-related components in content are successful.MethodsWe searched 13 databases, including PubMed, Medline, Global Health, EMBASE, ADOLEC, Social Policy and Practice, Database of Promoting Health Effectiveness Reviews (DoPHER), Trials Register of Promoting Health Interventions (TRoPHI), EPPI-Centre database of health promotion research (Bibliomap), Web of Science, PsycINFO, Cochrane and Scopus for studies involving arts interventions aimed at reducing any or all components of mental-health-related stigma among youth (10–24-year-olds). Risk of bias was assessed using the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool for Quantitative Studies. Data were extracted into tables and analysed using RevMan 5.3.5.ResultsFifty-seven studies met our inclusion criteria (n = 41,621). Interventions using multiple art forms are effective in improving behaviour towards people with mental health problems to a small effect (effect size = 0.28, 95%CI 0.08–0.48; p = 0.007) No studies reported negative outcomes or unintended harms. Among studies using specific art forms, we observed high heterogeneity among intervention studies using theatre, multiple art forms, film and role play. Data in this review are inconclusive about the use of single versus multiple sessions and whether including all stigma components of knowledge, attitude and behaviour as intervention content are more effective relative to studies focused on these stigma components, individually. Common challenges faced by school-based arts interventions included lack of buy-in from school administrators and low engagement. No studies were reported from low- and middle-income countries.ConclusionArts interventions are effective in reducing mental-health-related stigma to a small effect. Interventions that employ multiple art forms together compared to studies employing film, theatre or role play are likely more effective in reducing mental-health-related stigma.

Cognitive Dispersion Predicts Grip Strength Trajectories in Men but not Women in a Sample of the Oldest Old Without Dementia.

Background and ObjectivesGrip strength is a reliable marker of biological vitality and it typically demonstrates an expected decline in older adults. According to the common-cause hypothesis, there is also a significant association between cognitive and physical function in older adults. Some specific cognitive functions have been shown to be associated with grip strength trajectories with most research solely focused on cutoff points or mean cognitive performance. In the present study, we examine whether a measure of cognitive dispersion might be more informative. We therefore used an index that quantifies dispersion in cognitive scores across multiple cognitive tests, shown to be associated with detrimental outcomes in older adults.Research Design and MethodsUsing repeated grip strength measures from men and women aged 80 and older, free of dementia in the OCTO-Twin study, we estimated aging-related grip strength trajectories. We examined the association of cognitive dispersion and mean cognitive function with grip strength level and aging-related rate of change, accounting for known risk factors.ResultsCognitive dispersion was associated with grip strength trajectories in men and the association varied by mean cognitive performance, whereas we found no association in women.Discussion and ImplicationsOur results provide evidence of a sex-specific vitality association between cognitive dispersion and aging-related trajectories of grip strength. Our results support the call for integration of sex and gender in health promotion and intervention research.

Web-Based Primary Eye Care Analyzer for future Tele-Eye Health Care System

Primary eye care (PEC) is a vital component in the primary health care system. It includes the promotion of eye health, the prevention, and the treatment of eye conditions that may lead to visual impairment and blindness. Early detection of vision problems provides early intervention and proper rehabilitation of those who are already visually impaired or blind. This study aimed to provide helps to eye care practitioners to aid early diagnosis and to do the calculation of refraction error, simulation, and analysis of prescription for the patients. The Tele-eye health web-based program consists of a primary eye care system, practitioner modules, and patient modules to assist a simulation for patient care, training, health promotion, educational purposes, reporting, and future research. This web-based Tele-eye health program for primary eye care analyzer allows eye care practitioners and optometrists to aid for early diagnosis of eye and vision problems and use for future telemedicine practice.

Mindfulness-based interventions among people of color: A systematic review and meta-analysis

Objective In the United States, people of color (POC) are disproportionately affected by various sources of stress and prevalent mental and physical health issues that may benefit from Mindfulness-based Interventions (MBIs). However, effects of MBIs for POC are unclear. This meta-analysis examines the efficacy of MBIs through randomized controlled trials (RCTs) that included predominately POC (≥75% of the sample). Method: Random effects models were used to synthesize effect sizes. A total of 24 RCT samples were analyzed. Results: Samples were on average 94.4% POC and predominantly from low-income backgrounds (total N = 2,156). At post-treatment, MBIs yielded small but statistically superior outcomes to active controls (Hedges’ g = 0.11) and inactive controls (g = 0.26). Compared to active controls, MBIs’ effects on well-being were smaller than their effects on other outcome types. Compared to inactive controls, MBIs that focused on non-clinical populations and had higher proportion of POC had larger effect sizes. Attrition rates of MBIs did not differ from other active conditions in outpatient settings. Conclusion: Findings provide modest, preliminary empirical support for MBIs among POC. We discuss main findings, limitations, and implications for future MBI research for health promotion among POC.

Relationships Between Iron Status, Cognitive Performance, and Smoking Cessation

ObjectivesSmoking cessation research suggests that women are more likely than men to respond to financial incentives to quit smoking, despite having lower rates of smoking cessation overall. Animal models suggest that iron deficiency, which is more prevalent in women, may alter dopaminergic pathways involved in both reward processing and addiction. The present study examines the extent to which iron status impacts ability to quit smoking and performance on a battery of cognitive tasks, including tasks assessing learning and decision-making which depend on the integrity of the dopaminergic pathways. MethodsParticipants were recruited from a local smoking cessation clinic and followed for 6 months as they received counseling to quit smoking. Visits included a baseline appointment, as well as 1- and 6-month follow up visits. At each appointment, participants performed cognitive tests, including the serial reaction time task (SRT) and probabilistic selection task (PST), with concurrent EEG, then gave a small sample of blood. Smoking behavior was examined using time to relapse (TTR), which was the week (1–26) in which the participant relapsed, if relapse occurred. Iron status variables of interest were hemoglobin (Hb) and percentile of the NHANES III age- and race-adjusted distributions of serum ferritin (sFtP). Correlations examined the associations between iron status variables and reaction times (RTs) on the SRT and PST, choice behavior on PST, and TTR. ResultsTTR was positively related to sFtP (r = 0.79, P < .005). Regarding the cognitive measures, there was a nonlinear relationship between sFtP and RT for the SRT task: participants with sFtP at or below the 45th percentile had a negative relationship with RT, while those with sFtP above the 55th percentile had a positive one. Hb was negatively correlated with learning from negative consequences in the PST. In addition, RTs for high-conflict choices and correct responses had a nonlinear relationship with sFtP like that found with the SRT. ConclusionsVariations in iron affect smoking cessation as well as cognitive performance. Being low in iron may represent an additional burden to a woman who attempts to quit smoking. Funding SourcesTSET Health Promotion Research Center - Oklahoma Tobacco Settlement Endowment Trust (TSET; Grant # r21–02) and NCI Support Grant P30CA225520.

The connected patient project: moving towards a population-based primary health care research registry

BackgroundThe NHS pledges to give all patients access to clinical research. In England, 32% of General Practices are research active and only 14% of patients engage in research. This project aimed to evaluate consent-for-contact and communication in primary care patients.MethodsAn explanatory mixed methods study of patients and staff within a single general practice. The study included all patients over the age of 18 years, and excluded those on the palliative care register and those unable to give informed consent. The questionnaire asked recipients to indicate their preferred contact method and data-sharing permissions with three organisations: NHS, Universities and Commercial Companies. Survey recipients and staff were invited to take part in a semi-structured interview. Interviews explored project acceptability, feasibility and reasoning behind choices made. Statistical data were triangulated with interview data.ResultsThe target patient population was 4678, 24% (n = 1148) responded. Seven hundred and three gave permission for at least one of the organisations to contact them. Older people were more likely to respond than young people, (p < 0.001). There was a trend for more women than men to give permissions however, in the 70 years plus age group this was reversed. Short message service was the preferred method of communication (48% n = 330), but those aged 70 years and over, preferred letter (p = 0.001). Interviews suggested patients felt the project was primarily about improving communication and secondly access to research. Patients trusted the NHS and university researchers. Staff interviewees found the project was less onerous than expected. Barriers to wider rollout included workload and the fragmented nature of NHS digital systems.ConclusionsA registry of patients was established; however, the response rate of 24% needs increasing before wider adoption. Health promotion and chronic disease-based research may recruit better when based in primary health care. Older demographics would be more likely to volunteer for research. NHS and academic researchers are trusted, commercial organisations less so. The move to digitalise communication methods has the potential to marginalise older women. Findings were used to drive forward two novel developments: a consent registry (Research+Me) and a federation-wide participant identification process.