See also: Dealing with Non-Consenting Clients, Part 1
Do you have a lot of clients with Declined Consent? In 4.0.60.4 and lower, it’s called “Declined - Anonymous” but in 4.0.60.5 and higher it’s called “Declined to Share.” The HIFIS Health Check is one place that you can review what percentage of your clients have declined consent.
This metric varies wildly from place to place. Some communities and service providers seem to have no problem obtaining informed consent from 99% of their clients, with one or two occasional exceptions, while other communities/service providers insist that a sizeable portion of their clients refuse to consent to data collection.
So why is that? Why might two similar shelters have wildly different rates of non-consenting clients?
The main driver of clients not consenting seems to be institutional culture. The discussion is typically framed as a trade-off between protecting client confidentiality/privacy/safety and the benefits of data sharing. When there is low trust between organizations, they stress the importance of protecting their clients. When upper-level management in an organization doesn’t see the benefit of data sharing, they don’t communicate the benefits of data sharing to their staff, who in turn, don’t communicate the benefits of data sharing to their clients.
However, having a large portion of clients in HIFIS who are not consenting to information sharing causes a number of problems:
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If a non-consenting client accesses two service providers, both service providers must complete an independent intake. This means having the client tell their story multiple times, wasting the client’s time and staff’s time, and potentially re-traumatizing the client.
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If a non-consenting client accesses multiple service providers, they end up with duplicate files. It’s extremely challenging to de-duplicate clients at an aggregate level, so this can result in an inaccurate count of people needing services or people experiencing homelessness.
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These clients are not counted in the COR report and don’t show up on a prioritization list, so it is likely that whatever mechanism your community is using to count homelessness is excluding these clients.
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Clients not consenting to information sharing cannot participate in the coordinated access system. For the individual client, that means having less opportunities to access housing and exit homelessness faster, which is bad enough. But if it’s at a service provider level, who has many non-consenting clients that aren’t participating in coordinated access, that encourages the service provider to find back doors and alternate exits from homelessness, eroding the coordinated access system itself.
Fixing the Culture
So how do you fix this problem? First, identify the non-consenting clients. Now this is a bit tricky because by definition, these clients have not consented to share their information with you, so you have to be careful about it. Luckily, each consent record comes with a record indicating which service provider created the record. Your goal is really to identify which service providers have higher rates of non-consenting clients.
In order to do that, one tool you can use is the Anonymous Clients report. This simple report displays a list of all clients with active Declined consent at selected Service Providers.
Then, figure out why these service providers have higher rates of non-consenting clients. This often comes down to language used, the perspectives of staff, and how clients are asked for consent.
Imagine three different ways to present the same consent form to a client:
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Approach 1 (Negative): "I'm supposed to get you to sign a form that says we can put your data in a government database and bunch of other agencies can access your file. You don't have to sign it though if you don’t want to — you can still sleep here tonight."
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Approach 2 (Neutral): "Here's the consent form for you to sign."
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Approach 3 (Positive): "I want to make sure you're connected to as many services and resources as possible so we can work together and end your homelessness as quickly as possible. Do I have your consent to share information about you what I'm doing with you with other agencies? Only the people that are directly involved in helping you are allowed to access any of your personal information. If there's anything you don't want shared, let me know and we can keep that part private. And you can change your mind at any time."
Let me first ask, how do you think you would respond to those three different approaches? How do you think an average person experiencing homelessness would respond to those three different approaches? Now think about someone in your community who’s been chronically homeless for years, how would they respond?
The way that consent is asked for has a lot to do with your front line staff and their training. If they’ve bought in to the idea that data sharing is beneficial to the client, they will present the consent forms in a more positive light. If they haven’t, then they’re more likely to present the form in a neutral manner, or even a negative one depending on their personal experiences. And if a new hire hasn’t yet formed an opinion about data sharing, they will inherit the approach of their coworkers or supervisors unless you train them otherwise.
Here’s an example of one community's approach to training front line staff on consent:
And here's an example of the consent script they provide in training.
Review your training program and see what is being communiciated to front line staff about consent. Maybe it’s being presented inconsistently. Maybe staff don’t have enough information. Maybe the topic of “how to ask for consent” isn’t even covered. Maybe you need to revise that section of your training program, or maybe develop a whole new section. Your training could:
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Reinforce that when clients agree to data sharing, staff have to do less paperwork, since they can now access the data the client provided at another intake point. It saves the staff time if the client signs, so they might try harder to obtain consent.
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Show how clients can access more/better/faster services if they agree to share information. Staff want what's best for the client, so if they see a benefit, they'll be more positive and encouraging when presenting the form to clients.
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Reinforce that privacy is being taken seriously, and teach staff how clients' information will be protected, through auditing or user rights, and who will have access. Staff that understand these features can better communicate them with clients, and can provide this information to clients who are reluctant.
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Clarify policies and procedures and lay out expectations that staff follow them.
You may need to start at the top, with managers or directors who are not completely onboard with the idea of data sharing. Invite them to have a say in data-related decision-making. Offer them reports to make it easier for them to get the data that interests them. Listen to them when they express concerns. There’s no magic wand here that immediately makes people buy in, but transparency, accountability, and open two-way lines of communication can go a long way towards this sort of collaboration. It’s a process, it might take time, but you can get there. If you need ideas, come to the HIFIS Community Call, the CAEH Conference, or a BFZ Learning Session and ask some other communities how they’ve solved these problems.
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