Background
Methods
Data collection and measures
Brief partnership interview survey
Key informant interviews
Data analyses
Results
Results from the survey data
Total (M, SD) | Academic (M, SD) | Community (M, SD) | Government (M, SD) | |
---|---|---|---|---|
Organization and Structure of Meetings (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
1. I find ACG partnership meetings useful. | 1.71 (.726) | 1.50 (.707) | 1.88 (.835) | 1.50 (.577) |
2. The ACG partnership meetings are well organized. | 2.14 (.770) | 1.50 (.707) | 2.38 (.744) | 2.00 (.815) |
3. Background materials (agendas, minutes, etc.) needed for meetings are prepared and distributed well in advance of meetings. | 2.29 (.726) | 2.50 (.707) | 2.25 (.886) | 2.25 (.500) |
4. I wish we spent more time at partnership meetings hearing about and discussing ACG projects. | 2.79 (.699) | 3.00 (.000) | 2.50 (.756) | 3.25 (.500) |
5. We do not accomplish very much at ACG partnership meetings. | 3.57 (.756) | 4.00 (1.414) | 3.25 (.463) | 4.00 (.816) |
6. I believe that we adequately address all of the agenda items at the ACG meetings. | 2.29 (.726) | 1.50 (.707) | 2.50 (.756) | 2.25 (.500) |
7. When I want to place something on the meeting agenda, I am comfortable with the process. | 2.21 (.802) | 1.50 (.707) | 2.25 (.886) | 2.50 (.577) |
8. I would like more of a voice in determining agenda items for the ACG partnership meetings. | 2.86 (.363) | 3.00 (.000) | 2.75 (.463) | 3.00 (.000) |
9. One person or group dominates at ACG partnership meetings. | 3.50 (.760) | 3.50 (.707) | 3.25 (.707) | 4.00 (.816) |
Trust—Part 1 (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
10. Relationships among ACG partnership members go beyond the individuals at the table to include member organizations. | 2.21 (.893) | 2.50 (2.121) | 2.25 (.707) | 2.00 (.816) |
11. I am comfortable requesting assistance from other partnership members (when I feel that their input could be of value). | 2.07 (.829) | 1.50 (.707) | 2.38 (.744) | 1.75 (.957) |
12. I can talk openly and honestly at the ACG partnership meetings. | 2.14 (.770) | 1.50 (.707) | 2.25 (.886) | 2.25 (.500) |
13. I am comfortable bringing up new ideas at the ACG partnership meetings. | 2.14 (.770) | 1.50 (.707) | 2.25 (.886) | 2.25 (.500) |
14. ACG partnership members respect each other’s point of view even if they might disagree. | 2.29 (.611) | 2.00 (.000) | 2.38 (.744) | 2.25 (.500) |
15. My opinion is listened to and considered by other partnership members. | 2.07 (.829) | 1.50 (.707) | 2.13 (.991) | 2.25 (.500) |
Trust—Part 2 (1) increased, (2) stayed same, (3) decreased, and (4) don’t know | ||||
16. In the past year, my willingness to speak and express my opinions at partnership meetings has: | 2.31 (1.109) | 1.50 (.707) | 2.57 (1.134) | 2.25 (1.258) |
17. Over the past year, the amount of trust between ACG partnership members has: | 2.29 (1.267) | 2.50 (2.121) | 2.63 (1.302) | 1.50 (.577) |
18. In the past year, the ACG partnership members’ capacity to work well together has: | 2.14 (1.167) | 1.50 (.707) | 2.38 (1.188) | 2.00 (1.414) |
19. How much trust is there between partners now? | 2.14 (1.351) | 2.50 (2.121) | 2.13 (1.356) | 2.00 (1.414) |
20. In the next year, how much trust do you expect to see between partners? | 2.14 (1.351) | 2.50 (2.121) | 2.13 (1.356) | 2.00 (1.414) |
Decisions (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
21. I am satisfied with the overall way in which the ACG partnership makes decisions. | 2.14 (.949) | 2.00 (1.414) | 2.13 (.991) | 2.25 (.957) |
22. All partnership members have a voice in decisions made by the group. | 2.07 (.829) | 1.50 (.707) | 2.13 (.835) | 2.25 (.957) |
23. It often takes the ACG partnership too long to reach a decision. | 2.86 (.770) | 3.00 (.000) | 2.75 (.886) | 3.00 (.816) |
Impact (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
24. The partnership of the ACG has been effective in achieving its goals. | 2.00 (.784) | 1.50 (.707) | 2.13 (.835) | 2.00 (.816) |
25. The work of the ACG has brought benefits to my community. | 2.07 (.917) | 2.00 (1.414) | 2.25 (.886) | 1.75 (.957) |
26. Participation in the ACG has increased my knowledge and understanding of the other organizations represented. | 2.14 (.770) | 2.00 (1.414) | 2.25 (.707) | 2.00 (.816) |
27. Participation in the ACG has increased my knowledge of health disparities and social determinants of health. | 2.00 (.784) | 1.50 (.707) | 2.00 (.926) | 2.25 (.500) |
28. Participation in the ACG has increased my organization’s capacity to conduct communitybased research. | 2.14 (.864) | 1.50 (.707) | 2.25 (.886) | 2.25 (.957) |
29. ACG-affiliated projects are improving health outcomes for people in Washington DC metropolitan area. | 1.86 (.864) | 2.00 (1.414) | 1.88 (.835) | 1.75 (.957) |
General Satisfaction (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
30. I am generally satisfied with the activities and progress of the ACG during the past year. | 2.14 (.770) | 2.00 (1.414) | 2.25 (.707) | 2.00 (.816) |
31. I am satisfied with the types of projects that the ACG has implemented. | 2.14 (.864) | 2.00 (1.414) | 2.38 (.744) | 1.75 (.957) |
32. I have adequate knowledge of the ACG budget, ACG resources, and how resources are allocated. | 2.71 (1.139) | 2.50 (2.121) | 2.50 (1.069) | 3.25 (.957) |
33. I would like to have more input regarding the allocation of ACG resources. | 2.79 (.699) | 2.00 (1.414) | 2.75 (.463) | 3.25 (.500) |
34. I am satisfied with the ACG’s efforts to translate research and evaluation results into information and programs that can improve health in Washington metropolitan area. | 2.50 (.855) | 2.00 (1.414) | 2.75 (.886) | 2.25 (.500) |
35. I am satisfied with the ACG partnership’s attention to the ongoing sustainability of relationships within the partnership. | 2.21 (.699) | 2.00 (1.414) | 2.25 (.707) | 2.25 (.500) |
36. I am satisfied with the ACG partnership’s attention to building the capacity of all partners to participate actively in the work of the partnership. | 2.21 (.802) | 2.00 (1.414) | 2.38 (.744) | 2.00 (.816) |
Strategic Planning (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
37. Our strategic planning process resulted in the development of concrete goals and objectives. | 2.29 (.726) | 2.00 (1.414) | 2.25 (.707) | 2.50 (.577) |
38. Our strategic planning process resulted in the development of appropriate strategies to accomplish our goals and objectives. | 2.29 (.726) | 2.00 (1.414) | 2.25 (.707) | 2.50 (.577) |
39. Our strategic planning process has helped to sustain the ACG. | 2.29 (.726) | 2.00 (1.414) | 2.25 (.707) | 2.50 (.577) |
ACG Policy Impact (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
40. The ACG has been effective in informing policymakers and key government officials about the ACG and its initiatives. | 2.36 (.745) | 2.00 (1.414) | 2.38 (.744) | 2.50 (.577) |
41. Involvement with the ACG has provided support for policy issues my organization feels strongly about. | 2.36 (.745) | 2.00 (1.414) | 2.38 (.744) | 2.50 (.577) |
42. The ACG has been effective at translating research findings into policy-relevant documents and educational materials. | 2.57 (.852) | 2.00 (1.414) | 2.63 (.916) | 2.75 (.500) |
CBPR and Government (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
43. It is important that policymakers and key government officials are informed about the ACG and its initiatives. | 1.50 (.650) | 1.00 (.000) | 1.63 (.744) | 1.50 (.577) |
44. Community interests are well represented in ACG activities. | 2.14 (.949) | 2.00 (1.414) | 2.25 (.886) | 2.00 (1.155) |
45. I served as a co-presenter or presenter representing the ACG or one of its affiliated projects at a conference, training, or workshop/seminar. | 2.64 (1.216) | 2.50 (2.121) | 2.63 (1.188) | 2.75 (1.258) |
Participation in Meetings (1) never, (2) 1–3 times, (3) 4–6 times, (4) 7–9 times, and (5) 10–11 times | ||||
46. Please indicate approximately how many times over the last year you have attended ACG partnership meetings | 2.14 (1.231) | 4.00 (1.414) | 1.63 (.744) | 2.25 (1.258) |
Assessment of Participation (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
47. I am satisfied with my level of participation in the ACG partnership. | 2.29 (.825) | 1.50 (.707) | 2.38 (.916) | 2.50 (.577) |
48. I have taken advantage of opportunities to influence the work of the ACG partnership. | 2.57 (.938) | 2.50 (2.121) | 2.38 (.916) | 3.00 (.000) |
49. I devote time outside of partnership meetings to ACG activities or projects. | 2.64 (.842) | 2.50 (2.121) | 2.63 (.744) | 2.75 (.500) |
Partnership Operations and Capacity (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
50. The ACG partnership has a clear vision of what it aspires to achieve. | 2.31 (.855) | 2.31 (.855) | 2.25 (.707) | 2.33 (.577) |
51. The ACG partnership vision has been translated into concrete, measurable goals that we aim to achieve. | 2.23 (.725) | 2.00 (1.414) | 2.25 (.707) | 2.33 (.577) |
52. The ACG partnership effectively represents the diversity of our communities. | 2.08 (.760) | 1.50 (.707) | 2.25 (.707) | 2.00 (1.000) |
53. Community interests are well represented in ACG activities. | 2.00 (.816) | 2.00 (1.414) | 2.25 (.707) | 1.33 (.577) |
54. The ACG partnership thinks strategically. | 2.08 (.760) | 1.50 (.707) | 2.38 (.744) | 1.67 (.577) |
55. The ACG partnership is well managed. | 2.09 (.862) | 2.00 (1.414) | 2.25 (.886) | 1.67 (.577) |
56. The ACG is following its own CBPR principles. | 2.15 (.987) | 2.50 (2.121) | 2.38 (.744) | 1.33 (.577) |
57. Partnership members take responsibility for getting work done. | 1.85 (.801) | 1.50 (.707) | 2.13 (.835) | 1.33 (.577) |
58. In the past year, ACG partnership members’ capacity to work well together has increased. | 1.92 (.954) | 2.00 (1.414) | 2.13 (.991) | 1.33 (.577) |
Communication (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
59. Members communicate effectively with each other during meetings. | 1.85 (.801) | 1.50 (.707) | 2.13 (.835) | 1.33 (.577) |
60. Partnership members communicate effectively with each other outside of meetings. | 1.92 (.862) | 1.50 (.707) | 2.13 (.835) | 1.67 (1.155) |
Benefits of ACG Involvement (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
61. Increasing recognition and respect for my organization in Washington metropolitan area. | 2.25 (.866) | 2.00 (1.414) | 2.25 (.886) | 2.50 (.707) |
62. Developing new collaborative relationships between my organization and other ACG partner organizations. | 1.92 (.900) | 2.00 (1.414) | 2.00 (.926) | 1.50 (.707) |
63. Working with communities with whom my organization has previously had little contact. | 2.17 (.937) | 2.00 (1.414) | 1.50 (.707) | 2.00 (1.414) |
Challenges/Limitations Associated with ACG Involvement (1) strongly agree, (2) agree, (3) neutral, (4) disagree, and (5) strongly disagree | ||||
64. ACG partnership activities do not address my organization’s goals and interests. | 3.31 (1.109) | 4.00 (1.414) | 3.25 (.886) | 3.00 (1.732) |
65. Membership in the ACG partnership requires a considerable time commitment. | 3.08 (.862) | 3.50 (2.121) | 2.75 (.463) | 3.67(.577) |
66. My (or my organization’s) opinion is not valued within the ACG partnership. | 3.92 (1.038) | 5.00 (.000) | 3.38 (.916) | 4.67 (.577) |
67. There is too little funding for my organization’s participation in the ACG partnership. | 3.46 (.967) | 4.00 (1.414) | 3.13 (.835) | 4.00 (1.000) |
Benefits Compared to Challenges Associated with ACG Involvement (1) yes vs. (2) no | ||||
68. From your organization’s perspective, do the benefits of participation in the ACG partnership appear to outweigh the costs at this point? | 1.27 (.467) | 1.00 (.000) | 1.17 (.408) | 1.67 (.577) |
69. From your personal perspective, do the benefits of participation in the ACG partnership appear to outweigh the costs at this point? | 1.27 (.467) | 1.00 (.000) | 1.17 (.408) | 1.67 (.577) |
Organization and structure of meetings
Trust
Decisions
Impact
General satisfaction
Strategic planning
ACG policy impact
CBPR and government
Participation in meetings
Assessment of participation
Partnership operations and capacity
Communication
Benefits of ACG involvement
Challenges/limitations (associated with ACG involvement)
Benefits compared to challenges (associated with ACG involvement)
Results from the in-depth interviews
Theme | Code | Representative Quote |
---|---|---|
Partnership involvement | Benefits of the ACG partnership | Synergistic Partnership With current project goals, the community partners are now contacting other communities in need and not just the population previously served: • “So we’re able to actually tap into a Hispanic group. We also did some LGBT (lesbian, gay, bisexual, and transgender) groups, as well. And we also got into the people, PWID (people who inject drugs), so we actually get to the community as well. So with that project that actually helped us expand even further out.” (community partner) Three organizations working together for a common goal—betterment of the community: • “But what I do see is most of these agencies and centers never interact with the academic community. And I think this partnership is showing them or at least making them aware of the fact that the universities also see this as a problem, hepatitis B in the U.S., so I think from that end, it probably makes them feel good that they’re not the only ones who are saying this is a problem. But the universities with the big hospitals also see that’s an issue.” (community partner) • “[…] actually bring a large segment of different areas of service of public health service to the table is a big accomplishment and a big positive.” (government member) New Knowledge Partnership members are gaining new knowledge regarding HBV throughout this partnership project: • “I think we’ve learned a lot, or there’s an opportunity to learn a lot in terms of where the gaps are, what kind of things are needed to improve services for this population.” (academic member) • “Work with the partnership has increased my awareness of HBV, my understanding of the disease and of the morbidity, mortality, statistics, and how it impacts especially our Asian immigrant and African immigrant communities, and Hispanics, not only here […] but nationally.” (community partner) Organizations have expanded their network due to current partnership: • “So just trying to work closely with them to better understand their networks, and how we can leverage that, in order for all of us to just be in communication and helping one another and spreading resources for the patients to reduce liver disease.” (government member) The partnership is working together, making small incremental steps to reduce disparities for better community health: • “So it’s small, incremental things, making positive, incremental changes, that’s what we’ve been doing. And I think what’s reflected on the community, it may not be overnight, but you can see the impact over time.” (academic member) |
ACG partnership project goals and accomplishments | Year 1 Goals | Goals for ACG partnership To achieve the goals of ACG partnership and increase communication between partners: • “My expectation is to achieve all our goals, and we work towards achieving the goals and hopefully to exceed as well. […] I was expecting to have better communications.” (community partner) Quarterly reports • “Every quarter, we have a quarterly report.” (academic member) HBV-related Goals Education and linkage to care: • “We hope to during the first year… educate more people about the prevalence and have hepatitis B, and then we hope to connect them also with resources that are in the communities.” (community partner) Screening: • “[…] getting more people to screen […] We need more funding for more screening, more outreach.” (community partner) Vaccination: • “They were trying to see if they can increase the number of people who were vaccinated, those coming from the high endemic areas of hepatitis B, etc., and also increase the vaccination and follow up for pregnant women and children.” (community partner) Resources: • “Resources as, like I said, a lot of our patients don’t have insurance. So they …have to pay out of pocket to see a doctor. But even you know, most of our patients can’t afford that. And then on top of that, if they’re positive and their viral load is high, they need medication. And unfortunately, you know, hepatitis B has no cure. So they’re going to be on medication and monitoring their entire life. So a lot of people with that extra expense, they’re not going to be compliant with medication and getting checked every six months. So resources would be providers that see patients just for free, or medication programs for free. … So location, transportation also falls into that category [of] resources. And then the last thing is vaccination because the Asian community has a higher risk of HBV, we usually recommend that they [and] their family get vaccinated.” (community partner) Not sure of goals: • “I don’t know if they didn’t get or not.” (government member) |
Accomplishments so far | HBV-related accomplishments Exceeded objectives: • “We exceeded all our deliverables. And even during this pandemic.” (community partner) Related to COVID-19: • “Especially with this year, COVID, there’s had to be a lot of adjustments made in terms of how to effectively reach the target population, and keep them safe.” (community partner) ACG partnership goals Building capacity: • “I think things happen along the continuum. I think that we have made some progress in terms of building capacity, in terms of engaging the community, but I think the real impact is not there yet.” (academic member) Funding and leadership: • “And that’s funding […] and with the leadership […] has been very successful around funding.” (community partner) Presentations: • “All the presentations […] at least four or five on the first years and completing, finishing all the other reports quarterly report.” (academic member) Having everyone at the table: • “Being able to pull all the partners together at the table is definitely part of the milestone to get people or organizations involved. So, that part? Yes. The details of the execution, I think is an ongoing.” (community partner) • “When they do test positive, there’s about 4 to 5% who test positive for B and about 2 or 3% for C, and all those individuals are contacted and linked to care services. And so right now, I think there’s a little bit more effort being put into following up with those individuals to see whether or not they are actually seeking treatment and on schedule for treatment.” (community partner) • “I think that the way in which they were able to bring a mix of academia, direct service providers, and government to the table, it’s always progress. And this is a major step towards doing much larger to have an impact on community health. I think that that was a terrific approach. And clearly, they weren’t doing that. Clearly they weren’t achieving that. But we were all at the table.” (government member) Others: • “I think it accomplished that particular goal. And that’s to take a program that’s on paper and to operationalize it. And to have good reporting systems, have a good relationship between the partners, which the program has. There’s excellent relationships between the partners. Good data. So I think it accomplished having the data. And I think more importantly than all of that, well, maybe as a result of all of that, what I think we all were able to, to actually to actualize was to be considered probably the best program in the country, among the five or six demonstration programs that were funded over a year ago with the system’s good data.” (community partner) | |
Future goals for screening | Sustainability of screening and vaccination: • “We need to work towards the sustainability of the screening for the hepatitis screening either at the clinics or private doctor’s offices. And then the vaccination as well.” (community partner) Involving “champions” in the community: • “What I hope to tackle next year is to be able to build around us people like champions in the community that will be able to multiply what we do in one place to other places.” (community partner) Birth dose: • “Most of the clinics, and even the centers that are in this partnership do not work directly with pregnant women. And I think that’s one of the requests of the grant. So hopefully, they’ll find a way of incorporating that in the second and third year.” (community partner) COVID-19: • “I think it’s also going to depend on this vaccination for COVID-19. And how successful that would be because then people will then start feeling comfortable to come into the clinics and the centers. And then the providers also feel comfortable going out to meet people to do the work. So, but I think they’re doing a really, really good job.” (community partner) Working with other community organizations, churches: • “As we all know, the people from the endemic areas are mostly people who are very religious, and the churches are still open. So if we’re able to access the churches and do trainings in the churches, we’ll still be able to reach the target population.” (community member) Educating community about COVID-19: • “[…] helping to educate the population about COVID.” (academic member) Screening, educating, vaccinating: • “Just screen as many patients as we can, provide education, more vaccines to prevent HBV and get people treated and linked if they test positive.” (community member) Health Fair: • “So we are planning a health fair […] So we have more people vaccinate, and we have more people come out for the health fair, and it’s always a good way for us to boost up the number.” (community member) | |
Future goals for ACG partnership and recommendations | Goals for systems Continuity of care: • “The first area has to do with how well governmental partners such as the health departments work together with the community partners, so that there’s much more of an ability to have continuity, especially for those persons who are HBV positive, helping to make sure that the reporting systems between community and governmental entities are strengthened. Also, so that’s much more of your health information exchange goal that’s in the proposal. So I’m hoping that in Year Two and Year Three that gets attention.” (community member) EMR, standardizing screening: • “There is a goal related to electronic medical records so that HBV becomes a part of anyone’s care coming in through the door. […] So standardizing HBV screening and care as part of patient care is important.” (community member) Raising awareness about HBV among minorities: • “Raising awareness, letting people know that there’s a lot of communities like Asians and Africans, where HBV is prevalent, and it’s not just because of STDs, but it’s because of where these are from. So that people are aware that there are big groups of hepatitis B positive patients that need to be addressed. So that we aren’t spreading.” (community member) Dissemination: • “There could be a summit or some sort of conference. There could be a creation of some sort of case consultation, for example, around perinatal hepatitis B. There could be engagement with medical providers around hepatitis B as an issue. There could be a coordinated activity where maybe one day is selected to actually promote and provide, for example, hepatitis B-related services. Whether it’s general community education, or otherwise, an emphasis on testing, for example, but that it would happen in multiple sites at the same time and promoted by all as one group one body.” (government member) Refine Project in the context of COVID-19 pandemic: • “We need to now begin to think in the context of implementing this program. In the context of COVID… COVID will still be with us next year. So the issue of safety precautions and ensuring implementation of community testing and community events in a safe manner will still be very relevant, so that context needs to be built into the program. […] Nobody was thinking of COVID before. Implementing this kind of program, this academic, community, and government partnership project to reduce hepatitis B virus, needs to be built with a strong context around COVID-19 in mind.” (government member) Other objectives Birth dose: • “Another thing came up more recently is the birth dose, Hep B birth dose […], engagement, and tracking and that kind of things. And mostly previously, it’s more on immigrants - African and Asian. So we need to figure out how to engage with pregnant women and get into vaccinating when they have a baby within a day. So that would be one thing we hope to accomplish with documented changes and interventions and see we can get something done.” (academic member) Unsure Unsure about goals for Years 2 and 3: • “That I’m not sure.” (community member) Need for clear communication and attendance in meetings to better understand project goals: • “We weren’t included in more of those meetings that may help us better understand other partners who are involved in other parties that we can leverage or who may be interested in working with us.” (government member) • “If we were to attend more meetings, I definitely think that could be advantageous to us.” (government member) • “And so what I really do hope for the project is that they continue to work together as a partnership. And really solidify that partnership and a couple of areas that are in the grant proposal that still needs strengthening.” (community member) • “Hopefully, we can have more engagement, communication, a meeting. So currently, for example, just some of us meeting more regularly. Hopefully will be more frequent. But this could be a downside to that. And just more time will be involved.” (academic member) | |
ACG partnership project challenges and barriers | Overall challenges so far | ACG partnership Time to communicate: • “It’s a major barrier and challenges with the partnership. It’s coordinating the time to communicate. Coordinating and scheduling time to coordinate. […] And we were planning to do three meetings for Year One. But the third meeting, we’re not able to do because of COVID, and that’s our biggest challenge.” (community member) Addressing birth dose: • “One of the challenges is that one of the goals was to focus on birth dose and trying to identify the best way to look at that, measure that, examine that. So that’s been a challenge. And so I think the team has been really working hard trying to identify ways they could address birth dose.” (academic member) Being clear on goals and outcomes: • “One challenge, again, is that I think the whole partnership needs to be clear on what the overall goals are, and what the outcomes are. So that has not been as transparent as I think I would like.” (academic member) HBV Reaching out to target population: • “The barriers during the first year I think it was basically to get the word around and then get the people we found positive to get treatment.” (community member) Lack of ability to reach out to the community and other racial/ethnic minorities: • “What we lack is the ability to reach out to the community and other ethnicity organizations.” (community member) Mistrust from community: • “We had to learn ways to adapt. […] What are you here for, there’s no such thing as free. So that’s always a barrier, is there cost or the hidden costs?” (community member) Working with three different communities: • “We have to be cognizant that each of these has their own dynamic within their community, how they are seeing, who they connect with, what, how they can work with their policymakers, so on and so forth, how they work within their medical and health, infrastructure within that community. I think that’s the part that may be lacking a bit. How do we build up each of our partners within the networks that they live within?” (community member) |
Anticipated future challenges and barriers and recommendations to overcome challenges | Related to HBV Continued challenges due to COVID-19: • “The challenges so far remain just the COVID issue. […] And we hoped that it can get in control as soon as possible so we can go back to those large physical settings that we use to do in order to educate more people.” (community member) Related to ACG Partnership Lack of funding: • “I think funding, funding from CDC is a major barrier and that needs to be brought to their attention.” (community member) • “Funding is usually a major barrier.” (community member) Transparency of partnership goals and outcomes: • “One challenge, again, is that I think the whole partnership needs to be clear on what the overall goals are, and what the outcomes are. So that has not been as transparent as I think I would like.” (academic member) Equitable relationship with partners: • “I would make sure that the community partner, their relationship is equitable, that it is not so academic driven.” (academic member) Challenges in Health Information Exchange: • “Building up that capacity around EMR systems, I think that’s going to go on for a while. And hopefully, we can get that together so that it becomes standardized practice.” (community member) Challenges in evaluation and sustainability of the program: • “So I do think that heading toward the middle of Year Two and Year Three, there has to be a conversation about the partnership, whether it’s a partnership that’s going to disappear, or whether there are monies that hold the partnership together, or even without money as what other things do they have in common that really motivates them to stay together as a partnership. That’s going to be a challenge.” (community member) Completion of the project: • “So we have one year, a few months under our belt. And I think one challenge …, we have to be more open to different audiences, different settings, and engage with different populations. So that could be a challenge as well. So that’s why we hope for completion but the challenge for us is the pandemic.” (academic member) Time commitment: • “In the perspective of managing the national task force and hepatitis B, we have monthly meetings. And I think one of the biggest challenges of having standing meetings is the time to time commitment, especially, if you’re asking individuals who are not doing this as a full-time job, to carve out some time during the workweek to meet, I think that could be potentially one of the biggest challenges if this is not their full-time job.” (community member) | |
ACG partnership involvement in government or policy | Current involvement in government or policy | Current involvement in government or policy: • “Your local department of health is sort of like your policy agency, in many respects, at least for local policy. So the fact that we’ve been at the table would sort of lead to that.” (government member) Not currently involved in government or policy: • “We are so busy doing the groundwork, doing the grassroots work. So we never have an opportunity to talk to the government or the academic.” (community member) • “I don’t think this project is involved in any of the policy.” (community member) Uncertain: • “I believe so. So I myself didn’t really pay a lot of attention on the policy level, because [I am] occupied with tasks.” (community member) • “I’m not sure about this answer, but I will, I would think yes, but I’m not sure about this answer.” (community member) • “To the best of my knowledge, I have no idea. I really don’t.” (community member) |
Future recommendations for involvement in government or policy | Increase Community Testing/Screening, Vaccination, and Education Increase testing available to minority population: • “Hepatitis B vaccination should be made available free for people who don’t have insurance, especially for the adult population.” (community partner) Immigrant Health Policy Dissemination of findings to legislatures interested in immigrant health: • “In the Chinese community, the medical community, there are professionals trying to advocate for the community for hepatitis B, hepatitis B resource. So I know, at least like 10 years ago, a physician, […] he was able to really go to the Capitol Hill and fascinate the Congress. So we have an event like that. And he was very successful.” (community partner) |
Partnership involvement
Another policy benefit mentioned was the partnership’s ability to inform policy through information provided to the academic and government organizations. A community member stated, “It’s important to be able to report that information and share it in the academic world. And that those reports and research findings are also shared with the government so they can make better policy decisions.” Moreover, through the partnership, community organizations can work with the academic and government organizations to more efficiently and effectively reach individuals who need help, execute project plans, and disseminate research findings beyond the academic and government settings and into the communities. As two community members pointed out:So this partnership is so crucial, you know, it needs, like this table needs four legs, and it needs this four legs in order for it to work... and so being in this project, it has actually created this big impact. Because, you know, now we can communicate with the Department of Health, we can communicate with the academics, you know, to do publication, so more people are gonna be aware. And so, so the impact is big.
Partnerships are to strengthen community relationships and your ability to outreach to the target population, so that actually gave us a better understanding of actually, what ethnicity needs more help. Back then we only mainly focused on the Asian, and African; now we go into the Black community, the LGBT group, and people [who use] drugs.
In addition, partnership members affirmed that funding has helped with resources, especially at the start of the Coronavirus 2019 (COVID-19) pandemic, when people were losing jobs and a lot of attention was paid to infectious disease screening and vaccinations. An academic member said, “Several people got funded and other groups as well through this grant during the pandemic. I think it’s really helpful for them. And also, through this grant, more people are getting screened and vaccinated, and linked to care. So that’s, I think it’s substantial health benefits as well.”It’s benefiting them in the sense that they have somebody and people that are well, knowledgeable about things about issues that affect the community, they are benefiting about the fact that we bring to the community and close to them, you know, services and resources that they can use in order to continue to get in control of their own health.
Project goals and accomplishments
Regarding goals related to HBV, participants indicated increasing education, screening, vaccination, outreach, resources, and linkage to care. Community members conveyed that providing education and resources and linking patients to care will help lower infections and “bring awareness to the disparities and the different communities that have HBV, and ultimately … a little bit more resources to help these patients.”Yeah, so my understanding when the partnership meetings were set up, it was to engage different stakeholders in the decision-making of being able to outreach, educate, screen link patients to care services relating to hepatitis B, and possibly C, depending on the stakeholders and, you know, where their focus and interest is. So, the stakeholders should have included community-based organizations, the academic institutes, and the government agency, so that there are multifaceted perspectives in the decision-making of that cascade of care.
They give progress reports, they disclose challenges to implementation. I remember, the last one, we talked a lot about our COVID as it impacted the community outreach, testing, and ways that they can go around the outcome, we continue to make sure that we’re providing services, even amid COVID intervention, I think this is really very good.
I think, more importantly, is rais [ing] awareness with the government agency that’s providing the funding to make sure that funding continues because of the important work that’s being done in the unmet needs that’s happening in viral hepatitis world, especially with hepatitis B. So I think, you know, in that coalition meeting, what needs to be addressed is the understanding that this is still an ongoing disease burden that needs attention... and making sure that, you know, there, there is a sustainable plan, in terms of helping patients realize what the disease burden is, and to raise awareness for prevention.
Other objectives include providing continuity of care for individuals who test HBV positive, strengthening reporting systems and health information exchanges using electronic medical records (EMRs), and addressing HBV as standardized screening. One community member shared:There might be an opportunity [to] enhance support or funding for hepatitis B. That, I think, would be necessary. And it’s only just now happening for hepatitis C. And this is very recent. I think hepatitis B needs to be looked at similarly.
That’s an important goal, having the EMR systems that are able to do that are fundamental to that process, because it helps clinicians, as they log on, to always be reminded that HBV is part of routine patient care. So that in Year 2 and Year 3, I hope that there’s work to strengthen the EMR component, as well as the health information exchange component, so that both the internal work around HBV and the internal to external reporting and management are both strengthened.
Project challenges and barriers
Contrary to their colleagues in the partnership, community members heavily emphasized “how [their] membership on the WB-HBV Project Task Force required/s a considerable time commitment.” Attendance at meetings by community members (1–3 meetings) was considerably lower than attendance by academics (7–9 meetings). Some participants cited “busyness”, “being overly committed with other responsibilities”, and “low staff coverage to attend partnership meetings” as possible reasons. As our project standing meetings were originally agreed upon when the partnership initially formed, pre-covid, it is very likely that new/additional responsibilities naturally arose over time due to the competing/immediate priorities caused by the pandemic (especially for our community partners who were active “in the field”).I think one of the biggest challenges of having standing meetings is the time commitment, especially if you’re asking individuals who are not doing this as a full-time job to carve out some time during the work week to meet, I think that could be potentially one of the biggest challenges if this is not their full-time job.
For HBV-related activities (screening, linkage to care, and vaccination), some of the overall challenges mentioned included contacting the target population (including local organizations that serve racial/ethnic minority communities), linking them to care, and working with different communities in the WBMA area. A community member described mistrust as a challenge in HBV-related activities because community organizations are viewed differently from hospitals:In the beginning, we were having trouble kind of just gathering all our information because everything just started so we didn’t really know what information was expected from our organization, like number-wise and stuff like that. But once we kind of understood what was expected [it] was easier.
When they come, and of course, we have our banner, our website, and what we offer, but to them, it’s still, “You’re not a hospital. So why should we go there and get our blood drawn [ … ] from someone we don’t know?”
Another community member mentioned that using evaluation to inform programming, sustain HBV-related activities or programs, and build capacity around health information exchanges or EMRs will be important future work of the ACG partnership that will allow for “a stronger linkage between the community, the community partners and the health department around data.” Members also emphasized that important factors for the ACG partnership are clear communication and transparent goals and outcomes, equitable relationships with partners, and commitment of time.For example, there might be an opportunity to enhance support for funding for hepatitis B. That, I think, would be necessary. And it’s only just now happening for hepatitis C. And this is very recent. I think hepatitis B needs to be looked at similarly. It’s always included, but it’s never received the right attention because it’s not curable.
Partnership’s involvement in government or policy
I think there should be more work done with state legislators as well as state viral hepatitis coordinators. But it all really comes down to the federal government and whether or not there’s the budget allocated to address hepatitis B in particular, because I know there is already funding for hepatitis C.
In addition, several members emphasized the importance of disseminating findings of the project to legislatures interested in immigrant health, which has been successfully done in the past. One member from the academic organization stated, “I think one thing would be having speakers come in, having us do a presentation with the legislator … and I think when we talk about the dissemination of the findings, making sure we disseminate our findings back to legislators, as they are key stakeholders.”Yes, my recommendation is to continue to increase the number of testing, having testing available to help the minority population to get to the point of care. So, if they can have more testing and more partnerships in [the] community that will be a good thing. [Especially] if the work that is being done now is [replicated] to have more people and more partners so that while we are targeting one community, other communities [are] being targeted somewhere else.