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As of July 2012
in partnership with Patient Advocates In Research (PAIR)
Sentinel Network CHW Training Workshop
This is the team that put this training together. More information about the Sentinel Network begins on slide #__!
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Remember, this workshop is the BEGINNING step of an ongoing dialog with your community. Action steps will come from it, so be prepared to follow-up regularly with the community to build the kind of relationship and commitment that both sides need. We have created a community brochure that gives Sentinel Network results back to community members and organizations.
As of July 2012
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Sentinel Network CHW Training Workshop
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Health research covered in slides 5- HealthStreet: slides Sentinel Network: slides Communicating effectively: slides Minimizing risk: slides Digging deeper into Health Research: slides
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Unfortunate, our medical system doesn’t flow well for people. When you become a patient, you’re dropped into a whole new world that is not user-friendly! Your role as a CHW is very important to help lead people into thinking about health and how to get help when they need it.
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People who have never been exposed to the intricacies of cancer treatment are overwhelmed by the language used and the decisions that must be made.
As of July 2012 Sentinel Network CHW Training Workshop
People care more about how their participation in a study will affect their daily lives and those of their family. Researchers often focus more on that study itself and forget to think about it from a patient’s perspective. As CHWs, you can help both sides work together more effectively.
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PAIR: Patient Advocates In Research 9
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There are many kinds of health research. Different kinds of research
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It’s really important to help people understand these points about health research. If done well, research teaches us how to get better answers to people more quickly. There are many ethical rules now that help protect people who join research studies so they won’t be exploited. It is still important for people to participate actively in any medical or research settings to ensure that we’re asking the right questions and getting results that matter.
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Unfortunately, misperceptions still exist, but the U.S. population is changing quickly. It’s important to keep these kinds of facts in mind as you develop a Sentinel Network program.
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To communicate well, it’s good to start with where the other person is. What are their motivations and concerns?
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To communicate well, it’s good to start with where the other person is. What are their motivations and concerns?
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To sum up, people are interested in research if they are treated with respect, and offered studies to consider. CHWs play an important role in introducing people to the idea of health research and specific studies.
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These next slides explain how a Community Engagement (CE) model was developed in St. Louis by Linda Cottler, PhD. The HealthStreet model is the foundation for the Sentinel Network’s (SN) approach to community engagement. Pictures: demographic sections that are tracked, the van used for outreach, and inside the HealthStreet storefront.
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Here are some of the common community locations that CHWs frequent to collect information on the Intake Form. Can you think of more in your community?
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HealthStreet keeps track of the number of medical and social service referrals given, and they follow-up with people to see if they used the services. This can then be reported to learn more about each community.
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The Sentinel Network (SN) was created to communicate more effectively with real people living in their own communities. The next slides explain what the SN does and how you might use it as a model for Community Engagement (CE).
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These are the goals established for the Sentinel Network (SN). Please see the SN brochure for more information.
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The Sentinel Network (SN) has achieved great success in a short amount of time, and has only just begun! The next slides explain the results, and how you can join this successful team.
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The SN works due to the coordinated efforts of all partners, and provides invaluable data that can be compared by race and demographics because of the consistent methods to collect, follow-up, and report the data.
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The process behind the community outreach success of the Sentinel Network stems from standardized forms that have been created for all sites, using the HealthStreet model as a starting point. The Intake Form is used in the field with individuals to identify their concerns and to learn about their personal health history. From this assessment, referrals for services and research studies can be given on standard forms created by SN partners. An equally important function is the ability to track who was seen, what resources and studies were offered, and if they followed up on them.
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Community Health Workers (CHWs) are at the heart of the Sentinel Network’s (SN) success.
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These are recommendations from existing SN CHWs on how to prepare for the role.
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Please refer to the SN Intake Form for more details.
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These are suggestions from existing SN CHWs.
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Next, recognize any biases YOU might have about other people or communities. Everyone has them – the key is to be aware of yours and then consciously remember to avoid them when working in the field.
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It’s really important to leave any pre-conceived biases and judgments at home before you start approaching people with the Intake Form. For instance, some people WILL travel for different reasons. Perhaps they like the social environment or something. And even if someone says to you that they won’t be in a study that has medications, they have been known to change their minds after talking with you.
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It’s important to remember this and remind researchers of this whenever appropriate. CHWs play an important role in bridging some of the gaps that have existed between researchers and people in communities. Check out the Intercultural Cancer Council website for more examples.
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Many different definitions for these words, here is the essence of each. Again, try to eliminate your biases before working in community settings.
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It’s important to remember that everyone is different, even people within a certain community. CHWs play an important role in bridging some of the gaps that have existed between researchers and people in communities.
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The key to success is preparation. Prepare yourself, have an ample supply of Intake and follow-up Forms, your Resource and Referral binder, and any other materials that you will hand out. And don’t forget extra pens! Plan your talking points – have some key phrases ready for some questions or objections that may be common, but be sure to listen and clarify what each person is saying before answering. For$example,$you$will$need$a$quick$response$if$after$you$hand$them$a$flyer,$they$just$want$a$referral$without$finishing$the$Intake$Form.$ The next slides give ideas on how to handle some situations.
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Body$language$is$important:$if$you’re$uncomfortable,$they$know$it.$$Try$to$go$with$a$partner$and$make$sure$you$can$see$them$if$that$makes$you$feel$safer.$Pay attention to your surroundings. If it doesn’t feel safe, or if someone makes you feel very uncomfortable, walk away or leave. If a person is disruptive or gets too close, you can stop or walk away.
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You can fill out the date and location information on several forms prior to interviewing people. This saves time with each person. Privacy is very important – there is a whole section on privacy later in this workshop. Be$calm$if$other$people$come$up$to$see$what$you’re$doing.$$Ask$them$to$wait$or$sign$up$for$contact$information.$$$
Hand$them$your$flyer.$$If$they’re$really$interested,$give$them$the$consent$form$then$so$they$can$look$it$over.$
Have$a$clipboard/binder$to$maintain$control$of$the$information:$Staples$has$a$locked$storage$binder$with$clipboard$on$the$outside.$
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If$you$have$goodies$to$give:$put$a$few$trinkets/goodies$out$and$hide$the$rest$–$also$can’t$‘bribe’$people$to$fill$out$the$surveys$(pens$are$good)$
Have$another$person$to$help$manage$a$‘crowd’.$If$you$have$a$person$who$doesn’t$leave$(may$be$w/them)$–$say$“why$don’t$we$move$over$here$for$a$little$more$privacy.” If they have to go before you’re finished, get their phone number, or address to mail$them$a$consent$and$call$them$to$do$the$intake$form.$
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These are tips from existing SN CHWs. Remember, they don’t know anything about what you do. You have to build a comfortable place before they will open up.
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Here are possible ways to start the process after introducing yourself.
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Here are ideas from existing SN CHWs.
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Each section starts with a question in bold. While you need to ask each question as it is written, you don’t have to repeat the whole question for each item under the bold area. Just go through the list with them and record their answer. It’s ok to wait for their answer even if it takes them a little while to formulate an answer. Remember, they haven’t been thinking about these things before you approached them! On most questions, they have a Y/N option so you can just run down the list with them.
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Suggestions from existing SN CHWs.
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Here are some ideas about how to bring up consent in general. You can use some of these ideas for getting consent on the Intake Form too!
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Here are some ways to ask the drug use questions. Don’t$offer$your$opinions$or$answer$any$comments$or$questions$they$might$ask$you$about$yourself.$$Stick$to$the$survey$questions.$
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More suggestions from existing SN CHWs.
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More suggestions from existing SN CHWs.
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More suggestions from existing SN CHWs.
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Knowing that they’ll get resources from your makes people more interested in doing Intake Form with you. Here are ideas from existing SN CHWs.
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Here are suggestions from existing SN CHWs on how to talk about medical and social services that might help them.
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These national organizations are also a good source of information as you build your community resources. If you find more sites like these, please let us know!
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People sometimes have negative impressions of research, even though they’ve never been involved. There is a lot of misinformation out there, and as a CHW, you play a big role in setting the record straight! Here are a few ideas about topics that SN CHWs have encountered.
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If your institution has an organized, accessible database with research studies in it, congratulations! Most don’t. Either way, it is important to build close ties to the research offices that coordinate health research studies. You may be able to start with an interested investigator. Go$to$faculty$meetings,$use$billboards,$CTSA$newsletter,$etc.$
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Washington University and its HealthStreet model have been doing this the longest. Here are some groups they work with in addition to individual investigators.
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More suggestions from existing SN CHWs.
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There are rules of conduct and regulations that try to protect people from harm when they join a research study. Sometimes, the rules are valuable, sometimes they go too far and thwart research, and sometimes they don’t protect enough. It’s hard to keep up with the ramifications of scientific discoveries, but there are whole fields that focus on this. It’s really important to maintain the balance between protecting people and still allowing research to find out the answers we need.
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Unfortunately, there have been medical atrocities that have exploited some people, such as these examples. Most of our regulations have been in response to one of the atrocities. We can never give 100% protection, but many rules now protect people from these kinds of problems with research.
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The Belmont Report was created by an international group to lay out the foundations of research. It includes Justice, Respect, and Beneficence. Each of these are explained on this and the next slide.
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More Belmont principles of respect and beneficence.
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There are many ethical issues that have no clear answer to them when discussing how research is done. While some issues may have moral answers, that’s not the same thing as whether or not it is ethical. For instance, since patients often get more closely monitored and may be able to get newer therapies even with unknown risks, is it then ethical to not tell them about clinical trials?
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Before anyone joins a research study, they must be informed that it is a research study, what will be done, what the risks and benefits are, and how they can learn more. Studies are voluntary and study participants can leave the study or refuse to answer questions at any time (although in some cases, their information or treatment cannot be stopped). These consents are approved by an Institutional Review Board (IRB) at each location where the study is done before a study can be opened at that location. Once a study has started, large studies may also be monitored by a Data Safety and Monitoring Board that monitors safety data and results at regular intervals.
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Here are some of the requirements and other rules that are part of federal regulations. Items in the “Requirements” column HAVE to be in an informed consent form that a person signs before entering a study. Items in the “Additional Elements” column can be in an informed consent, but don’t have to be.
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In research, the researcher (investigator) is responsible for making sure the study follows the ethical principles that are accepted today. Everyone in the system, including CHWs, should respect each person and share knowledge that may help them. This includes research and resources.
The role of the CHW in the Sentinel Network is to give an introduction to studies they are aware of, and refer people to a study coordinator to learn more about the study. NOTE: important to complete human protections training available at your institution!
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Health research studies include all types of studies that help people live healthier lives. Here, we focus more on medical research studies and clinical trials that are usually treatment-related. These studies are organized and go through levels of review before they can be opened in either a single site or multiple locations.
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There are 4 main phases of clinical trials. Each study falls into one of these phases. For instance, a Phase I study of a treatment for colon cancer may try different doses of a new drug to reach a level that is safe and shows activity against cancer.
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Many clinical trials also have sections in them that studies how the treatment in a study may affect other factors that are important to the rest of a person’s life.
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To make sure that studies develop results that can be analyzed, they follow a consistent plan called a protocol in all locations. Parts of a protocol are listed here.
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For people who are diagnosed with illnesses like cancers, it can be very confusing and complicated to decide what to do next. The research system focuses on the left column of issues, but as it suggests, people have these things happen whether or not they enroll in a research study. The real issues for a person considering enrollment into a research study is to consider how much time it might buy and at what costs. It’s important to remind people that these same issues exist for any treatment they might choose.
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