User Research Survey

1.What is your role in healthcare? (choose all that apply)(Required.)

Other (please specify)

2.How satisfied are you with the quality of healthcare in the United States?(Required.)

3.Are you aware that your medical records (Real World Data) may be bought and sold as data by insurers, healthcare providers, and research organizations, once your personal identifying information is removed?(Required.)

Wow, I had no idea.

Yes, I am aware of this practice.

4.How do you feel about having your de-personalized medical information shared as Real World Data?(Required.)

I have no concerns.

I would like to be financially compensated and review the information for accuracy when my data is shared.

I do not need financial compensation, but would like to review my data for accuracy before it is shared.

I do not need to personally review the data for accuracy, but would still like to be financially compensated.

I am opposed to my health data being shared, for any purpose other than my own medical care.

5.Based on information from the Digital Health Measurement Collaborative Community, the current market value of health data is estimated at $150 per person per year. Does this affect your thinking about compensation?(Required.)

I am interested. I could use an extra $150!

I am not interested at this level of compensation. However, I would like to be able to direct the proceeds from my data towards helping others economically impacted by serious illness.

I am not interested in receiving any financial compensation for my data, or being in any way involved in how revenue connected to the sale of my data is allocated.

6.Would you choose to self-report symptoms to help track and slow the spread of infectious diseases and future pandemics, if a secure and anonymous system made this possible?(Required.)

Yes

No

Maybe

7.Which of the following types of organizations do you currently trust to protect patient privacy and information security when handling sensitive healthcare data?(Required.)

Other (please specify)

None of the above

8.How do you feel about cryptocurrency?(Required.)

I don't know much about it, but I'm curious to learn more.

I don't trust it at all, and I think it is only for criminals.

I have used cryptocurrency in the past, and had a positive experience.

I have used cryptocurrency in the past, and had a negative experience.

No opinion.

9.One of the current limitations of applying Real World Data in healthcare research is that because the records are de-personalized, they are also very fragmented. If a person moves or changes doctors, data is lost. With patient consent, it is possible to measure and study data over a longer time period (decades, even a lifetime). This could yield new insights about the causes and treatments of disease. It could also help reveal connections between symptoms and side effects that are missed during short-term clinical trials.

Would you be willing to provide a detailed historical health narrative for AI research purposes -- provided that you received a dedicated login ID and your name and other identifying information were not stored in our system?(Required.)

Yes, this is a great idea.

No, this is too invasive of personal privacy.

No, for reasons other than privacy.

Maybe. I would need more information to decide.

Yes, but with the following reservations:

10.What do you feel is an appropriate price point for the value of the data (and of your time) in assembling such a health narrative?(Required.)

User Research Survey

Health Experience Repository