doi: 10.1111/hex.12249

Soliciting views of various communities on health research: a prelude to engagement in specific research projects Howard L. Taras MD,* Michael W. Kalichman PhD,† Gery Schulteis PhD,‡ Jill Dumbauld MPH,§ Yvonne Bell MBA,¶ Fe Fidelis Seligman MA** and Kathy D. West MBA†† *Professor of Pediatrics; Director of Community Engagement, §Manager of Educational Programs, Clinical & Translational Research Institute, University of California-San Diego, La Jolla, CA, †Professor of Pathology, Director, Research Ethics Program, University of California-San Diego, La Jolla, CA, ‡Associate Chief of Staff, Research & Development, VA San Diego Healthcare System, Department of Anesthesiology, University of California-San Diego, La Jolla, CA, ¶Chief Executive Officer, Clinicas de Salud del Pueblo, Inc., Brawley, CA, **Director of Grants and Programs, Operation Samahan, Inc, San Diego, CA and ††Chief Executive Officer, Epilepsy Foundation of San Diego County, San Diego, CA, USA

Abstract Correspondence Howard L. Taras MD Clinical & Translational Research Institute University of California – San Diego 9500 Gilman Drive M.C. 0990 La Jolla CA 92093-0990 USA E-mail: [email protected]

Background Members of the public are increasingly engaged in health-service and biomedical research and provide input into the content of research, design and data sharing. As there is variation among different communities on how research is perceived, to engage all sectors of the general public research institutions need to customize their approach.

Accepted for publication 16 July 2014

Design Following a literature review, a research institution engaged with four different sectors of the public through their respective representative community-based organizations (CBOs) by interviews with leaders, community member focus groups and a joint project.

Keywords: biomedical, community, community based organization, public, research

Objective This paper explores how research institutions and community leaders can partner to determine the best ways to engage different sectors of the public in research.

Setting San Diego and Imperial Counties, California, United States of America (USA). Conclusion Before embarking on more specific research projects, investigators can gain valuable insights about different communities’ attitudes to, and understanding of, health services and biomedical research by interacting directly with members of the community, collaborating with community leaders, and jointly identifying steps of engagement tailored to the community.

Introduction Public involvement in health research has been endorsed internationally by major national sponsors of such research, such as UK’s

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National Institute of Health Research (INVOLVE),1 the Canadian Institutes of Health Research,2 Clinical and Translational Science awardees of the National Institutes of Health in the USA3 and the National Health

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and Medical Research Council of Australia.4 Involving the citizenry in setting research agenda and objectives can enhance the userrelevance of research questions, recruitment strategies, consumer-focused data interpretation, and implementation and dissemination of research findings.1–6 Although evidence is mixed as to whether investigators in health services and biomedical research are involving members of the public in their research, the trend towards community-based participatory research and community-informed research is favourable.7–9 Public engagement in research is one dimension of public participation. Engagement of the public is a process of inclusive participation that supports mutual respect of values, strategies and actions.10 A community can be defined as a sector of the public living in the same place or a group of people who share a particular common characteristic. People with a common health condition (e.g. asthma), with a common set of needs because of their age (e.g. people over age 80 years), or with a common historical connection (e.g. refugees recently immigrating from an underdeveloped part of the world to a Western industrialized city) can all be considered communities.11,12 Different communities have varying levels of interest, acceptance or understanding of research. The most salient evidence for this comes from variation in research participation rates among different sectors of the public. Historical abuses of human subjects by race can play a role,13 and understanding of health and healing that is based on non-Western medicine can also contribute to differences. Similarly, level of education (including understanding of the scientific method) and low levels of what has been termed, ‘research literacy’ are known to impede participation in clinical research.14 An argument can be made that research would benefit if, prior to conceptualizing or even seeking funds for a research project, investigators were better engaged with the public, insofar that researchers gain a better appreciation for the attitudes to and understanding

of research among the particular communities to be studied. This knowledge has the potential to enhance broader representation of human subjects in research and, equally important, avoid inadvertent exclusion of a community’s input into a nation’s, institution’s or individual investigator’s research agenda. Once engaged, public participation in research, communityacademic relationship building, identification of community assets and sharing of knowledge can be continuous and sustainable.15 To optimize engagement in research, research institutions should begin with a better understanding of the communities in which the studies will occur.16 The goal of this project was to explore how research institutions and leaders of CBOs can partner to jointly determine how to best engage different sectors of the public in health service and biomedical research.

Methods Population Four different communities collaborated with the Clinical and Translational Research Institute (CTRI) at University of California – San Diego (UCSD), a research institution, to design the study. These communities were chosen based on their respective characteristics: (i) common geography, (ii) ethnicity and culture, (iii) shared health condition and (iv) common experience. The four corresponding CBOs were (i) Clinicas de Salud del Pueblo, a non-profit entity comprised of 11 community clinics in Imperial and Riverside Counties, California, representing a rural, agrarian-based population; (ii) San Diego Asian Pacific Islander (SDAPI) Community Health Network, of Operation Samahan, Inc., representing local Asian-Pacific Islander immigrants; (iii) the Epilepsy Foundation of San Diego County representing persons with seizure disorders and their families; and (iv) the San Diego-based Veterans Medical Research Foundation and the Veterans Affairs San Diego Healthcare System (VASDHS) representing military veterans.

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Information gathering The first step was to review published research describing the health and/or clinical research perspectives of each of these four communities. After this, research institution representatives conducted focused interviews with CBO leaders or key CBO employees identified by the four CBO leaders. With their input, a 1.5-hour focus group was designed for 8–12 members of each community. The academic health centre worked with CBO leaders and contracted with Research Works Inc (San Diego, USA) to prepare interview questions and to moderate group discussions. Each CBO research partner invited its own community members to join the focus group. Each focus group began with introductions of research team members (who were from both the researcher institute and its partner CBO in that community) to focus group participants. They then shared a meal. Following this, staff members from the research institution and from the CBO requested permission from members of the focus group that they be observed from a separate room via webcam or one-way mirror. Three focus groups were conducted in English, and one (rural Imperial County) was conducted in Spanish, the first language for 66% of that population. In addition to focus groups and literature reviews, each CBO received funds to cover two positions: 20–25% full-time equivalent (FTE) of a project coordinator and 0–10% (FTE) for a CBO leader. Each CBO partner collaborated with the research institution to identify one short-term project or activity and was offered US$5000 (£3275) to activate it. The goal of each project or activity was to either enable that CBO to increase the understanding of clinical research among members of the public it serves or to make clinical research engagement a CBO objective. A final interview was conducted at the end of 1 year to determine leaders’ views on sustaining research institution collaboration and engaging their clientele with research matters. All information-gathering methods were designed to identify and understand each

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community’s concept of health and what motivates or prevents leaders of the CBO to promote clinical research and participation of community members in research, including clinical trials. This included assessing awareness of clinical trials and other research conducted by local research institutions, what motivates members of the community to participate in clinical research, channels through which promotion or participation is possible, and barriers and opportunities (see Table 1, Moderator Guide). About 25 min of each focus group discussion solicited reactions to posters with images and written messages designed to market health services or biomedical research to the general public. Data analysis Using written transcripts of all meetings with four groups of CBO leaders, academic researchers pulled salient or outstanding features that characterize each of the four communities. These community characteristics were then verified with one respective community leader representative from each of the respective CBOs (i.e. co-authors of this manuscript). For focus groups, qualitative analyses of each of the four groups’ discussions were based on transcriptions of these discussions and were performed by a neutral contracted agency located in another part of the country, the Center for Information and Study on Clinical Research Participation (CISCRP; Boston, USA). CISCRP used the Moderator Guide as a template to identify the information that researchers wished to glean from these discussions. Transcripts were searched for statements, phrases, words and repetitions that characterize the knowledge and attitudes of focus group discussants. In addition to a narrative that provided answers to key questions in the Moderator Guides, the four summary reports included several sample quoted statements that CISCRP felt were representative of the discussion. Focus group consent forms and research were approved by an Institutional Review Board of the Human Research Protections Program at University of California – San Diego.

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Results Literature review Published data demonstrated distinctive health characteristics of the populations represented by each of the four selected CBOs (Table 2). Focus groups Focus group discussions with community members revealed some attitudes and knowledge common to all four communities. Altruism was a motivator for all four groups. For example, one group participant said ‘Sometimes people participate to help the person behind them. It may not necessarily help them, but it might help someone in the future’. Members of all focus groups felt that their participation was contingent on trust for the institution hosting a research project, and that developing a close relationship with researchers would sway them towards remaining in a study. Limited scientific literacy (i.e. appreciation for the scientific process needed to determine the efficacy of a health innovation) was apparent in all focus groups. Many community members did not recognize that research protocols and methodologies must be fully designed and approved in advance of recruitment. For example, one said, ‘They tell everyone that they are going to give them the medicine. But they end up giving one group medicine and not giving it to the other group’. Many group members were also not aware of stepwise progression of medical research from laboratory to animal models to human clinical trials, speculating that clinical trials take place in a laboratory with animal subjects, ‘hopefully not to a human’. Many assumed that new therapies were researched on humans only when all else failed. A typical comment was: ‘They’ll do a clinical trial because they have no other answers, and no other hope’. Nevertheless, there were differences (Table 3). Scientific literacy was higher for veterans and members of the Epilepsy Foundation than families of immigrant Asian Pacific Islanders and low-income, rural Latinos. The former

Table 1 Focus groups: sample items from moderator guide Warm-Up What’s the first thing that comes to mind when you think about medical research? What’s the first thing that comes to mind when you think about clinical trials? Awareness of Research/Clinical Trials What kinds of health-care providers do you see when you have a health issue? Where do you go when you have health problems or are feeling sick? Who do you most trust when you need information about your health or the health of your family? Tell me a little bit about what you imagine is involved if you were to participate in a clinical trial? What, if anything, have you seen or heard lately about clinical trials (e.g. advertisements? something that interested you about in participating? good press? bad press?) How do you feel about medical research? What kinds of people do you imagine participate in clinical trials? How are those people protected? How many of you have been involved in a trial? How many know someone who has? After Explanations of Common Concepts/Terms Related to Clinical Trials Why would you participate in a clinical trial? What benefits could you imagine that you would get from participating in a clinical trial? What benefits do you think would convince you to think about volunteering? What benefits do you think would appeal to others? What do you see as the overall benefits of clinical research? Barriers to Participation and Addressing Barriers What are some things that would make it difficult to decide to participate? If you agreed to join a study, what are some things that would make it difficult to continue to participate? What if anything would make a positive difference for you to participate? What would you want to know? Who would you want to hear from? What do you think a researcher should know or think about when it comes to reaching you and reaching other people in your community? What do you feel are the best ways to reach you to help you learn more and get connected with research?

groups were more likely to have heard of control groups or placebos and appreciate their purposes.

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Soliciting Community Views Before Research, H L Taras et al. Table 2 Literature review: sample of data for four different sectors of the public

50 000 persons with epilepsy Sample health characteristics relevant to clinical research.

Cause of epilepsy unknown among 66%.17 30% have seizures that are uncontrolled.18 High association with depression.19

248 000 U.S. military veterans (29 000 veterans of Iraq or Afghanistan) More likely to report moderate to severe impairment in relationships due to emotions20 More likely to have been unable to work at least a year due to physical/mental impairment (California).20 High rates of alcohol and other substance abuse.21

When shown sample recruitment posters, all groups appreciated words such as ‘consider’ and ‘please’ before participating. Conversely, statements implying that they ‘should’ volunteer were less attractive. For several visual aspects of posters there were differences among the four communities regarding barriers and motivators to engage with clinical research (Table 3). Community Leaders/CBO Representatives Discussions with CBO representatives about their community members’ opinions of health and clinical research often confirmed much of what was learned from focus groups. Leaders of the veterans’ groups correctly predicted that the poster image of clinicians/scientists would not motivate veterans about research. Indeed, that was the only one of four focus groups to not endorse that poster image. Each CBO representative recommended best methods to engage individual members of their community in research that were concordant with what focus group participants had stated. Specifically, Latino residents of rural Imperial Valley could be engaged best through organized community events and through volunteer community members and paid frontline public

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175 000 residents of rural, agrarian region Higher rates of childhood asthma emergency department visits (2.7 times California state average, and 3.3 times higher than neighbouring, largely suburban County.)22 Highest obesity rate and second highest diabetes rate in California.23

135 000 Foreign-born Southeast Asian and Pacific Islanders Cervical cancer rates increasing more quickly than other U.S. ethnic groups.24 High incidence of Hepatitis B and TB for U.S. residents25,26

health workers who are trusted members of and/or have an unusually close understanding of the community served; Epilepsy Foundation members could be engaged best through Internet, e-mail and bulletins; Veterans through government health systems designed exclusively for them; and Asian-Pacific Islanders through faith-based or cultural celebrations and community health workers of the same ethnic heritage. Each CBO required a distinctive strategy to sustain a long-term relationship with the research institution. Three of the CBOs completed a small project designed to sustain their partnership and to engage their membership on matters of clinical research. The fourth CBO, the Epilepsy Foundation, developed ways to increase physical and electronic visibility for the research institution and clinical research among their members. At a concluding interview with a leader of this CBO, it was remarked that this agency acquired new understanding for research: ‘(We gained) familiarization with the language of research, new contacts, networking assistance; seeing both the bigger picture and the small details; getting to know the academic facility’. In the rural, agrarian community, the CBO and research institution jointly developed a

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U.S. Military veterans Most had a general grasp of clinical trials (e.g. random assignment, placebo)

Compensation is important Impression that most research participants are low income, jobless, or cannot afford care Recognize that research can improve health to community members, if not to the participant Direct marketing, as they suspect there are clinical trials they would be interested in, but do not hear about Disliked clinical images of doctors, others in traditional health uniforms Do not want visuals that too obviously like them (i.e. veterans)

Persons with epilepsy

Most had a general grasp of clinical trials (e.g. purpose of placebo)

Concern that their own time is very valuable Feel safest if their own doctor recommends participation in a clinical trial

Their own doctors should make them aware of clinical trials Respected websites

Liked images of smiling faces (which could represent volunteers or beneficiaries of research)

Scientific literacy; Perception of how research is conducted

Motivators and detractors for Volunteering

Trusted place to hear about research

Visual images that promote clinical research

Table 3 Focus groups: Sample of data collected

Safety and trust are major factors Want personal attention and connection with member of research team Recognize that research volunteers help humanity The community-based organization that recruited them for the focus group Compensation is important Motivated to help people they know personally, or people like them, in their immediate community

Preferred pictures of health professionals in greens and other traditional uniforms

People in their own community, who understand research or have themselves participated in a clinical trial Image of smiling faces considered disingenuous

Volunteers are ‘guinea pigs’

Low understanding of research process

Low understanding of research process Participation is a ‘last resort’ for those whose conventional treatment didn’t work Some volunteers are tricked into intervention vs. placebo group Motivated to help people they know personally, or people like them, in their immediate community

Cultural/ethnic and religious organizations Advertisements at local retailers that they trust

Common to all four communities

South-East Asian and Pacific Islander immigrants

Residents of rural, agrarian region

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curriculum to teach basics of clinical research to those without college education. The training was piloted to an audience comprised of the CBO’s front office clerks and community health workers. By having trained personnel on site, investigators are anticipated to have more confidence to feasibly conduct effective clinical research in a rural region – one that is distant from any major medical research centre. After the workshop, a CBO leader remarked: ‘The approach and methodology that researchers use is so comprehensive and purposeful. The mentality behind it is amazing. They leave no stone unturned’. The Asian-Pacific Islander Community Health Network, as has been noted elsewhere,23 claimed this community receives disproportionately lower research funding than other immigrant groups. One challenge that was recognized is that when multiple subpopulations are combined (e.g. Vietnamese, Samoan, Pacific Islander, Filipino, Cambodian), investigators and funders regard their health characteristics as being too dissimilar to research as one group. Alternatively, proposals to study any one of these groups isolated from the others have not been funded because population sizes are often too small for meaningful studies. This CBO proposed a joint project to identify health characteristics (e.g. lifestyle habits, high frequency conditions) that are similar or dissimilar among several Asian subpopulations. With such data, future research involving Asian PacificIslander communities may be viewed as more feasible and attractive for clinical studies. CBO leaders felt that it was very useful for the research institution to have learned about the diversity of their community as a result of the closer relationship: ‘There was very little understanding on the university’s part initially about the differences between, for example, Cambodians and Laotians’. Aside from the VASDHS and Veterans Medical Research Foundation (VMRF), most veteran. CBOs approached by this research institution were not receptive to including education about clinical research as a service to

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their members, and chose not to host any event for their clients about clinical research. These CBOs included, among many others, an internet-radio podcast organization that targets veterans, American Legion posts and agencies that help veterans find employment or rehabilitation within civic society. Veteran CBO leaders were sympathetic to the cause of clinical research, but saw clinical research education programmes as a departure from their central missions. An exception was the research institution’s, (University of California – San Diego) own veterans’ association, which had a small membership but was very interested in promoting future interactions between its members and clinical investigators. In addition, two organizations agreed to advertise a specific research study in their newsletter or Website (Veterans of Foreign Wars and Disabled American Veterans). It was learned that the most reliable way to reach large numbers of veterans in this region is to have a research project in collaboration with investigators who work in health systems that serve veterans exclusively (Veterans Affairs) and have all studies approved by this health system’s own Research & Development Committee (R&DC). Veterans Affairs’ privacy and human research policies restrict their medical centres from communicating with veterans via e-mail, postings, pamphlets at clinics about any clinical research, unless that research has been approved by their own R&DC. A leader from the Veterans Affairs health system and a leader from our community agency partner (VMRF) at a concluding interview, remarked that the project helped the research institution develop an important understanding of the uniqueness of veterans: ‘(The Veteran community) is a unique challenge; i.e. [who] veterans consider to be trustworthy if something new is proposed to them; [who] they trust information from’. ‘(This project) served as a good reminder of how foreign VA research compliance processes can be to non-VA research entities’. Table 4 summarizes what was learned from leaders of each of the four CBOs.

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Soliciting Community Views Before Research, H L Taras et al. Table 4 Findings from discussions with Community Leaders/CBO Representatives

Persons with epilepsy

U.S. military Veterans

Residents of rural, agrarian region Clinicas de Salud del Pueblo (a chain of publically-funded community clinics) Eager to be agreeable; will often volunteer when approached by a trusted, community health worker from their own community, even if they are not truly interested Developed and conducted training on basics of clinical research for CBO front office clerks and CBO community health workers

Community Based Organization (CBO)

Epilepsy Foundation

Veterans Medical Research Foundation

Distinctive characteristics of the community

Relatively young membership because epilepsy is often diagnosed in childhood

Veterans can be wary of motivations of non-veterans doing outreach

Joint project chosen by CBO to sustain long-term partnership with researchers and to engage community members about clinical research

Linked CBO and research institution Facebook and Twitter research messages to reach CBO clients Continual presence of researchers at regular Epilepsy Foundation events where clients are present

Collaborate with veterans’ own health centres

Discussion Before approaching community leaders and members, research institutions should begin with a literature review to better understand a community’s size, characteristics and predominant health needs. For example, knowing that more than 30% of people with epilepsy have seizures that are not well-controlled generated discussion of how this could be a plausible motivation for this community to establish dialogue with epilepsy researchers.27 Learning about a community in detail is likely best done before a specific research project has been defined, allowing for more creativity and flexibility,28,29 building relationships,30,31 and evaluating relationships.11 Conducting and analysing results from focus groups to learn about the sectors of the public for this project was expensive and time consuming, particularly with hiring that responsibility out to neutral professionals outside of the research institution and CBO partners. While formal focus groups

South-East Asian and Pacific Islander immigrants San Diego Asian Pacific Islander Community Health Network Several health-related concepts understood by mainstream Western cultures (e.g. ‘mental health’) may be foreign in concept and difficult to translate Research to identify health characteristics common to AsianPacific Islander subpopulations

offer a rich appreciation for characteristics of the community, interviews with CBO leaders could perhaps have served as a cost-effective, reasonably accurate method of collecting information regarding their communities’ attitudes to clinical research. This is consistent with others’ findings that interacting with community-based public health and social service providers can shed light on attitudes about clinical research and identify barriers to research participation.32 To minimize the risk that community leaders hold assumptions differing from perspectives of the community members,33 a few meetings with individuals in the community might be considered to confirm and contextualize input from community leaders. Research institutions should learn to work with a community’s representative CBO to tailor their methods of engaging community members in clinical research. For example, research institutions might best reach some communities through electronic social media, while reaching others through traditional

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community health workers who share the ethnicity or other background of the targeted community. Community health workers have successfully helped research institutions to engage communities and may even be essential for involving underrepresented minorities in research.34 Participants join research studies for many reasons, including altruism, compensation and personal relevance.35,36 These incentives were apparent in this project, but not equally powerful for all groups. While financial reimbursement for time was considered important by veterans from the VA focus group, it appeared to be less important to other groups even when poverty was prevalent in the community. It was particularly important for people with epilepsy that their time and effort had the potential to reduce burden of their disease. In the two ethnic minority communities studied here, successful engagement with a research institution could be accomplished best by appealing to participants’ beneficence for helping people they know or people very much like them. Although leaders of CBOs for three communities in this programme were eager to establish long-term investments and relationships with the research institution, this was not the case for most veterans’ organizations outside of the VA’s own health system. Although it is unfortunate that investigators independent of the Veterans Affairs system cannot reach a quarter-million local veterans through other veteran-related CBOs, it is important to recognize this limitation and the historical reasons it has developed. High rates of trauma-related experiences, unemployment and family stresses among veterans in the wake of U.S. deployments in Afghanistan and Iraq combined with the presence of a regional VA health-care system led to a culture among Veteran-related CBOs that protects veterans by avoiding activities that link them to research-related education or opportunities sponsored by non-VA organizations. This is an example of a community where focus of the research institution needs to be on respect and trust-building; factors which may in time

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help overcome barriers to direct engagement with clinical research.30 The Epilepsy Foundation was an example of an organization that could connect a research institution with a community sharing a common health condition. As the incidence of epilepsy is higher in children than adults,37 young families were highly represented in this CBO’s membership. As such, these are people who frequently access the internet, and social networking media were seen as a major focus for sustainable, future engagement with the research institution. Members of an organization with a common health interest, not surprisingly, demonstrated a higher level of research literacy than groups defined by a common immigration history or by their rural geography. Results from the focus groups left an impression that members of the public are not adequately provided with sufficient levels of research literacy. Our society’s educational systems as well as our medical research and public service institutions have clearly failed the public in this regard. When health-related innovations are conceived by scientists or health-care providers, many in these communities are currently led to believe that investigators immediately try these innovations out on volunteers. Our health system must better communicate that clinical trials require months and often years of planning, clearly defined hypotheses and a justifiable study design. On the other hand, many of these potential research participants would be offended if excluded from a study or would feel they had not contributed if they were placed in a placebo condition. The notion that research participation is primarily for those who have lost all other hope needs to be dispelled. The nature of our current system causes many in the general public to fail to comprehend the critical differences between regular treatment and research participation, a phenomenon referred to as the ‘therapeutic misconception’.38 Low levels of research literacy must be better understood and addressed by research institutions. Educating the general public may improve perceptions of clinical trials.39

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Conclusion Health services research and biomedical research require participation of willing volunteers from diverse communities to volunteer for studies and to inform investigators and funders about community perceptions and needs. Research institutions and CBOs would be well advised to focus first on public engagement by building relationships with specific communities before embarking on other levels of public participation in specific research projects. To reach all sectors of the public, research institution engagement with CBOs must be customized. Literature review, direct interaction with members of the community and working with representative leaders of CBOs can all contribute to engagement.

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Soliciting views of various communities on health research: a prelude to engagement in specific research projects.

Members of the public are increasingly engaged in health-service and biomedical research and provide input into the content of research, design and da...
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