Introduction

The use of scientific evidence in decision-making as a health promotion tool is indispensable to the production of adequate information. In order to use this evidence in an efficient way, it is important to consider research within in the context of the workplace reality in which the evidence will be used.¹ Effective interaction is needed between research and everyday work. The name given to this process by some authors is translational,² described as agility in transferring basic research results and knowledge to clinical research.

The benefits of the systematized research process can be incorporated in the work routine, through standard data collection for evaluations, comparisons and monitoring. It can be an option for local health surveillance, in response to situational diagnoses³ on many fronts, translated into actions to combat a specific pathology, data surveys and provision for health and behavior information etc., with real impact on planning and decision making at the local level.

In relation to the implementation of new processes, it is expected that some resistance will be found, for many reasons, including that of not-belonging.⁴ It is a challenging exercise^5,6 for Primary Health Care (PHC), professionals who deal with complex quantitative and qualitative demands every day, the diversity of which is a further challenge in itself.⁷

The culture of research that is developed alongside working practices is essential for Public Health improvement.² However, this is still a challenge in Brazil, because health professionals have limited experience of research conducted within their work routine and reports on this are scarce in the literature. Extrapolation of information collected in secondary or tertiary health services is not valid in the PHC context. In addition, the systematized description of health professionals’ experience in participating in research project data collection as part of their work routine is uncommon and unexplored.

This research note aimed to describe the perception of data collection undertaken by PHC professionals as collaborators of national research about the human papilloma virus (HPV).

Methods

This was a descriptive study in the form of an experience report on participation in the POP-Brasil survey - Epidemiological Study of National Prevalence of HPV Infection.⁸ POP-Brasil is a multicenter study, commissioned by the Ministry of Health and executed by the Moinhos de Vento Hospital in Porto Alegre (the capital of the Brazilian state of Rio Grande do Sul), under the Brazilian National Health System Institutional Development Support Program (PROADI-SUS),⁹ with the objective of estimating national prevalence of HPV infection and its types in Brazil and, specifically, in the country’s different macro-regions.

In order to enable data to be collected on 8,580 young people aged 16 to 25 years old from local communities, we invited 217 health professionals from 119 primary health care units in 26 Brazilian capitals and the Federal District, most of whom were nurses. The health care units were selected based on their representativeness of their respective health districts, as well as being based on the resources they had for collecting and storing samples. In addition to each Municipal Health Department agreeing to take part, health professionals needed to be interested in participating and have time available to do so. Their responsibilities were to recruit participants, for inclusion as research subjects in the community, to ensure the Free and Informed Consent forms were signed, to administer questionnaires and input questionnaire data, to collect, store and send biological material to the local study coordinator, as well as to control sample temperatures.

In order to evaluate health professionals’ perception, we administered an online questionnaire with defined and specific questions about HPV and procedures related to the result of the virus identification test, besides open questions about the experience and challenges of participating in the research.

Health professionals were trained at the beginning and during the course of data collection. Immediately prior to data collection the technical team responsible for the study carried out an on-site training in each state capital. Training was both theoretical and practical.

The theoretical presentation lasted approximately four hours and had an introduction on HPV, the study objectives, forms of publicizing and recruiting for the study, biological material collection methods and procedures for sending it to the local study coordinator, instructions on the questionnaire and step-by-step training on using the data platform. This training aimed to enable professionals to collect data in a standard way and prepare them to present the study to the management of the participating health units.

In the practical training, the health units were visited by the study technical team, and the collaborators underwent an interview simulation. An audio recording was made of the simulation so that professionals could hear what they said, in order to avoid censorship, approval or surprise in reaction to replies given by the subjects that would be included in the study. When training was finished, the professionals had to answer a theoretical test, comprised of questions about the study, in order to evaluate effectiveness of the training activities. Questions with a large number of wrong answers were revised, although this did not disqualify professionals. This test was applied again at the end of the study to identify its impact: not only the impact of the initial training, but also the impact of participation in collecting data on knowledge about HPV infection.

Participant recruitment was done by the health professionals inviting all young people in the age group set for the study who were registered at the health unit. If the list of registered young people was not available, we used other approaches: (i) eligible individuals attending the health unit for any reason not associated with the main study result; (ii) invitation by community health agents; and (iii) invitations by nurses from the School Health Program.

The study protocol was made available in a printed version for consultation, although we emphasized during the entire process that doubts should be shared with the technical team in order to standardize answers. During the study, professionals received immediate support through a Whatsapp group to clarify doubts and exchange information. Using Whatsapp, the technical team also shared successful experiences that happended in other places. Exchange of messages in the group took place as quickly as possible, so as to meet the professionals’ needs and facilitate the collection procedure.

In addition, a second visit was made to all units for the purpose of monitoring/auditing in order to ensure data quality control. This control included checking material used for collection, its organization and identification, besides checking Free and Informed Consent form signatures, checking whether questionnaires had identification labels, storage and correct temperature of biological samples.

HPV test results were made available on a data platform, accessed by the health professionals. Study participants could also access their results through an online interface with the platform by entering their code and date of birth.

The professionals received certificates for their participation as data collectors. Presentation of the preliminary results took place at an event held in the city of Porto Alegre, including a debate on the results found in relation to sexual health, HPV vaccination in Brazil and the importance of research in PHC.

The POP-Brasil study was approved by the Moinhos de Vento Hospital Education and Research Institute Research Ethics Committee: Record No. 1607032. All participants signed a Free and Informed Consent form. Additionally, a new project was submitted to the Education and Research Institute Research Ethics Committee - Certification of Submission for Ethical Appraisal (CAAE) No. 85067418.20000.5330 -, for the use of complementary data from the study: Approval 04/2018; Record No. 2584449.

Results

In total, 217 health professionals from 119 traditional model or Family Health Strategy health units and one Testing and Counseling Center (TCC) participated in data collection for the study. Professionals were mostly nurses (89.8%). Social workers, doctors, nutritionists, psychologists and nursing technicians also participated in the research.

Standing out among challenges reported was the difficulty in recruiting participants, given that they were young people who did not have health problems and thus did not see the need to seek the health service. The professionals considered several alternatives in order to overcome this challenge. One of them was to mobilize teams during health unit meetings. The professionals achieved considerable mobilization by making it widely known during their work and in group education actions (hypertensive and diabetic patients, elderly people, adolescents, parents and children, School Health Program), seeking to recruit young people who do not usually use the health units. When they agreed to participate, health service users in the study age group were referred to the professional trained in data collection. Some accounts they gave illustrate team work on several fronts:

Not only the team but also participants thought it was interesting to participate in the research. The community health agents’ role in recruiting people was essential for successful collection. (South 1)

Men’s Saturday at the Primary Health Care Unit, data collected from service users in the study age group. (Northeast 1)

Collection at event on Vaccination D-Day. (Northeast 2).

Today I collected data from childcare patients (I got some mothers to take part). Excellent experience. (Northeast 3)

At the time the questionnaire was administered, health professionals and service users exchanged relevant information. Health professionals got to know young people in their catchment area better and had the chance to carry out rapid tests for HIV and syphilis besides providing guidance to participants.

Participant recruitment varied considerably according to each state capital city owing to different factors. These included delays in the local Research Ethics Committee approving the study, strikes, local coordinators or collectors having difficulty in articulating recruitment and difficulties in reconciling work demands with research requirements. In places where achieving the collection target was difficult, we discussed and planned strategies for actions with local coordination teams during monitoring visits or through extra visits to train more collectors; or local articulation strategies, with joint efforts to collect cytological material, partnerships with institutions, schools, publicity in the media and/or at events etc.

The periodicity of questionnaire reply input was another challenge faced. Questionnaire replies were typed by collectors out of normal working hours in return for a financial incentive. With the aim of standardizing the sending of information, every 15 days we sent a newsletter on the study progress in Brazil as a whole and in each capital city, detailing goals, collection performance and important information on the research process; as well as a top five collectors, i.e. a ranking of the five collectors with the largest number of collections in the fortnight.

The way professionals participated showed their commitment and qualification. Returning to the discussion on building health evidence, participating in the study as data collectors enabled them to gain knowledge about how data is transformed into health information¹⁰ and, moreover, enabled them to recognize the importance of their work in a national health data context, as can be deduced from the following account:

Being able to contribute to Ministry [of Health] research was very rewarding. (Northeast 4)

Other positive aspects were shared:

Thanks to the study, many users who had not received information about HPV were interested in getting it. I also highlight increased awareness of health professionals in approaching the diagnosis and prevention of sexually transmitted infections, besides knowing the profile of young people and their vulnerabilities that facilitate planning actions to promote health and prevent diseases. (Southeast 1)

I found male participation in the research to be important, since we have difficulty in accessing this population in health services. This contributes to prevention among males and their being included in health action and service routines. (Northeast 5)

The study allowed me to talk about HPV with participants and verify the knowledge these people have about the virus. I realized that we need to intensify our educational activities and talk more with our adolescents and young adults. (South 2)

Providing feedback on the results to society and to collectors at the same time was wonderful, it was the first time I had the pleasure of accessing research results before they were publicized, I felt respected and appreciated. (Midwest 1)

Discussion

PHC health professionals’ perception of taking part in data collection was very participatory. It motivated them to get to know their population better and to participate in future projects.

A period of training and familiarization with work tools and research protocols is necessary in order to guarantee active and standardized participation of a research team. Initial training was important to reduce mistakes in data collection and research procedures, i.e, the so-called information bias,¹¹ besides reducing anxiety in relation to recruiting and collecting data from the male population.

Beyond getting to know the population of young people and their behavior patterns, the data collection process provided the professionals with the opportunity of recognizing challenges to be faced in territories they are responsible for. This was an additional benefit of recruiting of young people who would not usually access health care units and who, due to to other work demands, would not be the object of active tracing. The feasibility of conducting research projects associated with work demands was also revealed and, furthermore, resulted in improved service provision to users, contrary to what the professionals initially alleged to be an obstacle to the research.

In Brazil, the primary health care network focuses on health promotion through healthy diet, prevention and assistance to smokers and alcohol consumers, while sexual health is hardly ever or never approached.¹² Awareness about sexually transmitted infections is fundamental. In view of the demand for guidance on HPV test results, given insecurity regarding guidance to be given and procedures to be followed in the event of a positive result, a guide book was prepared and made available containing straightforward and direct information on the clinical behavior of the virus. This is a little discussed subject: there is no specific procedure, and HPV infection can be transient, result in warts or even cause cancer.¹³ Recommendations include vaccination in the right age range, condom use, cervical cancer screening and/or cauterization of lesions.¹⁴

At the end of the study, the professionals were able to have contact with the product of their work. The consolidated data provided information on the study population’s health and enabled health promotion and prevention actions to be planned. This feedback and the participation of the professionals in discussions at the event with representatives of Ministry of Health departments was an opportunity to seal the success of the PHC professionals’ participation, the importance of the results and of the research process experienced.

Nonetheless, some limitations should be considered. Both the health professionals and the health units were not selected randomly. This may possibly have resulted in the inclusion of better qualified professionals or those more interested in evidence-based health issues, thus creating a positive perception of their participation.

Critical knowledge arising from PHC professionals’ participation in an research process brings gains for their work routine and for research in general, moreover it represents a scientific contribution articulated with different fields of knowledge. Sharing with the scientific community the experience of collecting data for a national study, carried out with PHC professionals, changes the paradigm of research restricted to certain institutional or personal structures. The successful experience confirms that the everyday work of SUS Primary Health Care is compatible with carrying out research, provided that health professionals are trained and have the support of a technical team.