Our goal with NeedFinding is to find product opportunities for our virtual avatar for Parkinson’s patients. Coming from a user centered approach, we wish to understand our users’ expressed and latent needs.
Participants representative of the intended user base were recruited through team member Masum's lab.
One MD domain expert was recruited through team member Michelle's medical school program.
Identify Tasks
Parkinson's patients who are looking for reliable and vetted information and resources related to their disease
Form Hypothesis
Parkinson's patients' limited motor functioning and reduced trust in human social interactions make it challenging for them to find resources using traditional routes (e.g. web searching).
Gather Data
Expert Interviews: Interview domain experts (physicians, neurologists) to understand their concerns and recommendations regarding the optimal utility of such a tool for PD patients (as well as future expansions into other neurological conditions)
Need Exploration Interviews: Interview Parkinson's patients to determine the types of questions and information they have difficulty finding or would like to get from a virtual avatar experience, gain empathy and deeper insight into their daily lives.
History Interview: Interview Parkinson's patients to understand the sequence of events of how they would approach finding information related to their disease.
Observations: Team members will observe the interviews and take notes. Notes will be compiled.
Domain Expert Insights:
Dr. Leo Tianqi Li, MD, Northwell LIJ Hospital System
Concerns about scope - Q-Bot should not answer the following:
questions pertaining to predicting the future
changes to treatment plan
prognosis and progression
Suggestions for future use:
determining whether a certain website is trustworthy
checking insurance coverage for specific hospitals/procedures
simplifying medical jargon to varying levels of literacy
PD Patient Insights:
The following resources were emphasized:
The above resources are reliable sources of information regarding Parkinson’s disease.
There are lot of fake information online, the people must be make aware of them.
The bot should redirect to authentic sources.
Personal stories of other people (found in the websites) is useful.
Community about Parkinson’s is helpful.
PD Patient Family Member Insights:
Interpret and Reframe
The team will analyse and generate a list of potential user needs and product opportunities.
Domain Expert: Dr. Leo Tianqi Li, MD of Long Island Jewish Hospital System
Duration: 20 min
Walk me through the process of providing resources to a newly diagnosed PD patient and his/her family.
We have ancillary staff such as social workers, case managers, etc who know a lot more about available resources than physicians do. They help us and we trust the information they provide. It’s important to set up a safe discharge for patients where they are able to find the resources they need.
Do you feel that there are enough social workers/case managers for every patient who could benefit from meeting with one?
Social workers generally only work 9-5 weekdays, the limiting factor is more the individual patients’ insurances and whether there are available spots in rehabilitation centers. Often, when a patient doesn’t have good insurance that covers rehab it is actually difficult to discharge them safely. We are not able to discharge them by law, and they end up staying for a lot longer than they needed to. This is bad for both the patient and the hospital.
What types of external information/resources do you feel comfortable referring your patients to?
It’s important to cite where the information is coming from. If you sell your avatar as an information sharing or educational tool for connecting patients with credible sources, more people would be receptive.
What do you see as risks of such a technology?
Could it cause harm by providing information that causes unnecessary worry for PD patients and their families?
It’s a little concerning for certain topics to be automated to an AI that will perform its own interpretation. For example, if someone were to ask “how long does someone with PD live?”, the reality is that it depends, and a generalized answer may just cause more confusion and worry.
What would you suggest we do to prevent this outcome?
Limit the scope of the avatar – e.g. exclude categories of information that should only be discussed with a trusted healthcare provider. I would recommend developers work with physicians to determine these categories.
What are some categories of information you can think of right now?
Exclude:
Anything pertaining to predicting the future
Changes to treatment plan
Prognosis and progression
Include:
Medication side effects
List of providers and pharmacies that take my insurance
In-network
Out-network
Co-pay
What will my insurance cover?
Are there certain categories/types of PD patients that would benefit from this more than others?
Patients with language barriers and literacy barriers
Another use-case I can think of would be for the avatar to simplify medical jargon and be able to explain things to patients at different levels of literacy.
Do you think this is an effective use of this technology, and if not, can you think of alternative uses?
Honestly, the most common challenge for healthcare consumers is figuring out things to do with insurance. It would be more widely applicable if patients could ask the avatar direct questions such as “how much of my CT scan will be covered by insurance?” or “what hospitals nearby have trauma centers and accept my insurance?”