Input from Persons with Lived Experience

I think it is critical in Human Service delivery that time is spent speaking with recipients of services and benefits to hear directly from them. In the projects we have done – from homeless counts that use surveys to developing long term affordable housing strategies; program evaluations to redesigning income benefits; strategic planning to developing plans to end homelessness – we fundamentally believe that the voice of the consumer must be heard in legitimate, defensible ways to inform and empower end users of services. The adage “Nothing about us without us” from the psychiatric survivor movement rings very true in our work.

Here are 12 tips to introduce/improve interactions with persons with lived experience in your work.

1. Have a research design.

You can’t gather this sort of input and use it responsibly if you have not sorted out the methods by which you are going to gather information and the ethics involved in having people with lived experience involved. Just going out to talk with people is insufficient. How, when, where, why, who and what is spoken about are all essential questions that need to be answered before you start talking to people.

2. Seek informed consent.

Just because someone has received a service from you doesn’t mean they have to talk to you. Same goes for someone who may be eligible for a service but has never accessed a service. People have to be able to provide informed consent to provide their input and for you to use it. It is ethically dubious to assume that just because you are serving someone or can serve someone that they are implicitly consenting for you to use their input.

3. Don’t talk down to people.

Persons with lived experience have unique subject matter expertise. Yet a lot of the time the people engaged with them speak down to them. If the questions, tone or situation for the conversation is in anyway condescending, you’ve got it all wrong.

4. Bring in outsiders.

The people engaged with consumers of your services (past or present) to get their input should be different than the people that they rely on for service on a day to day basis. Bring in a consultant, fellow agency, volunteers or staff from a different program area to get input from the people with lived experience. Otherwise if people even think there is an iota of possibility that what they tell you having an impact on the quality or quantity of service they receive, sunshine will be blown up your derriere.

5. Set the tone.

You can’t just feel people out or end up trying to be a chameleon who can “talk street” or act like someone you are not. It is up to the person getting input from persons with lived experience to set the tone for the conversation…what the conversation is about, how long the conversation will last, how the information will be used, etc.

6. Do something with what you hear.

If you really want people with lived experience to have a meaningful impact in how you deliver services then you must act upon the feedback and other information you receive. Asking for input but doing nothing about it essentially de-values the time and input of people with lived experience.

7. Empower people to have a say.

Honest feedback and input is necessary. People should be encouraged to be as open as they feel comfortable knowing in advance that there are not repercussions for being forthright.

8. Don’t limit responses to folks that are accustomed to participating.

Some communities “suffer” from the same people with lived experience repeatedly on the same types of advisory groups to provide the same type of feedback. While that is all well and good you can’t limit input to just these people. You have to find ways of engaging with those individuals unaware or unaccustomed to providing the sort of input being sought.

9. Be willing to go to places not usually associated with research/feedback.

Related to number 8 above, I have found it very interesting and helpful to go out of my way to get input. I have gotten better response rates and more honest responses, for example, standing in an underpass near a homeless shelter than at the homeless shelter itself. I have done better getting outreach vans to drop me off at encampments and pick me up later than staying with me. I have strolled the streets and alleyways with people involved with sex work. I have stood in the foyer of public housing buildings. I have spent hours on a park bench in a neighborhood chatting to people who pass by. I have been out first thing in the morning as well as the middle of the night. If we want to honor the voice of people with lived experience it has to be about the places and times of day that make sense for them, not us.

10. Don’t confuse lived experience with expertise.

Just because someone has experienced, say, homelessness does not mean they are an expert on all matters of homelessness. There are some people who have never experienced homelessness that have a lot of expertise in homelessness. It is what the input is about that matters, not that all input is of expert caliber. Let me give you an example…I have had my appendix out and my gall bladder out, and I have broken my hip. I would consider myself to have some expertise in describing the pain, approach to getting care and how to be rehabilitated afterwards for any of these three conditions. However, I would not consider myself to have the expertise to prescribe pain medication, conduct the surgery, insert pins into a person’s bones or outline an appropriate meal plan or exercise schedule.

11. Gather the input on a scheduled basis.

Gather input when you say you will gather input from the people you generally intend to get input from. If the information collection from people with lived experience is seen as haphazard more than intentional you may not get the sort of rigorous feedback that you will benefit most from through the experience.

12. Don’t underestimate access to technology.

I now find it comical when service providers tell me not to use Twitter or Facebook or Survey Monkey or similar tools to get input from people who are homeless or experience precarious housing or poverty. Why? Because I tend to get response rates much higher than one might expect from the general population. Economically poor and homeless people tend to have considerable access to technology and wherewithal to use it. Avoiding these opportunities is grossly limiting a source for gathering input.

I hope some of these tips will help you in your work and improve your services.