Appendix B: Web-based Survey Questions
Access to Personal Health Records Survey, Spring 2012
The text of the survey is provided for the benefit of other similar projects.
Introduction:
The Inglis Foundation, The Children's Hospital of Philadelphia, and WGBH's Carl and Ruth Shapiro Family National Center for Accessible Media (NCAM) are collaborating on a joint project to explore how people with disabilities can use technology to manage their own healthcare. This project is funded by the U.S. Department of Education, The National Institute on Disability and Rehabilitation Research (NIDRR Award: H133G110095). Read our press release for more information on the project. This survey does not collect any personal information and all responses are confidential.
This survey will help us understand how people with disabilities can access their medical information to manage their healthcare. It asks what healthcare tasks and information are important to you. Later in the project we will explore in detail how to make the technology that supports these tasks accessible to everyone.
Thank you very much for your time. If you have any questions or concerns, contact us at ncam@wgbh.org.
Please rate the following items on how IMPORTANT each is to you and your healthcare: Even if you can't do something now, rate how important it would be to you if you could.
| Accessing your medical record | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
|---|---|---|---|---|---|
| Understanding the information in your medical record | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Finding the most important information in your medical record | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Pointing out information in your medical record that is out of date or incorrect | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Refilling or managing your prescriptions | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Reading and updating your medical, surgical and family history information | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Reading and updating your medication list and immunization history | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Transferring your medical information to new doctors, clinics or hospitals | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Having your important medical information available in an emergency | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Sharing your goals and concerns with your doctors and other healthcare providers | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Contacting your doctor or other healthcare providers any time you have a question or concern | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
Please continue to rate the following items on how IMPORTANT each is to you and your healthcare:
| Communication between all the providers involved in your care (primary care, specialists, etc.) | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
|---|---|---|---|---|---|
| Scheduling your medical appointments easily and at times and locations that work for you | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Receiving reminders about appointments, tests or any medical issue for which you are due | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Being able to access your care plan (treatment plan created for you by your care providers). | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Having access to trusted medical education information related to your healthcare (diagnosis, medications, etc.) | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Having access to trusted medical information or tools to help you manage your health (diet diary, exercise tracker, symptom log, etc.) | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Having information to help you understand the results of any test or result (lab, x-ray, EKG, etc.) | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Tracking important aspects of your health or treatment over time | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Understanding your insurance coverage and costs | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Managing insurance issues such as referrals, pre-certifications, coverage, approvals etc. | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
| Managing issues with medical equipment (wheelchairs, home health equipment, etc.) | Very Unimportant | Unimportant | Neither Important or Unimportant | Important | Very Important |
The following questions are to help us understand more about you and how you use technology.
How often do you do the following:
| Send or receive email | Daily | Weekly | Monthly | Never |
|---|---|---|---|---|
| Send or receive text messages | Daily | Weekly | Monthly | Never |
| Read news online | Daily | Weekly | Monthly | Never |
| Shop online | Daily | Weekly | Monthly | Never |
| Use social networking (Facebook, Twitter, etc.) | Daily | Weekly | Monthly | Never |
| Participate in online forums or discussions | Daily | Weekly | Monthly | Never |
| Access online videos, movies, TV shows, podcasts | Daily | Weekly | Monthly | Never |
| Create or update a blog or website | Daily | Weekly | Monthly | Never |
Please tell us which of the following you use regularly:
| A desktop or laptop computer | Yes | No |
|---|---|---|
| A high speed internet connection at home (cable modem or DSL) | Yes | No |
| A smart phone (cell phone with internet access) | Yes | No |
| A cell phone (without internet access) | Yes | No |
| A tablet computer (iPad, Kindle Fire... etc.) | Yes | No |
Please rate the following on how satisfied you are with:
| Your ability to use a technology independently | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
|---|---|---|---|---|---|
| Your having all the assistive technology you need to use technology | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
Please select the answer that best describes your living situation:
__ Resident of a long term care/skilled nursing facility
__ Resident in an assisted living/personal care facility
__ Live independently in a house or apartment
Please select the answer that best describes your vision:
__ Blind
__ Visually impaired
__ No visual impairment
Please select the answer that best describes your hearing:
__ Deaf
__ Hard of hearing
__ No hearing impairment
Please select the answer that best describes your physical abilities:
__ Severe physical disability (significant paralysis from injury or disease)
__ Mild physical disability (some limitations in mobility)
__ No physical disability
Please tell us if any of the following apply to you:
| Cognitive disabilities (memory or learning) | Yes | No |
|---|---|---|
| Difficulty with speech | Yes | No |
Please feel free to add any additional comments or descriptions about your physical abilities in the text box below:
[text box removed]
Please rate the same items on how SATISFIED you are with your current ability to perform each task.
| Accessing your medical record | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
|---|---|---|---|---|---|
| Understanding the information in your medical record | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Finding the most important information in your medical record | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Pointing out information in your medical record that is out of date or incorrect | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Refilling or managing your prescriptions | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Reading and updating your medical, surgical and family history information | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Reading and updating your medication list and immunization history | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Transferring your medical information to new doctors, clinics or hospitals | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Having your important medical information available in an emergency | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Sharing your goals and concerns with your doctors and other healthcare providers | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Contacting your doctor or other healthcare providers any time you have a question or concern | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
Please continue to rate the following items on how SATISFIED you are with your current ability to perform each task.
| Communication between all the providers involved in your care (primary care, specialists, etc.) | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
|---|---|---|---|---|---|
| Scheduling your medical appointments easily and at times and locations that work for you | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Receiving reminders about appointments, tests or any medical issue for which you are due | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Being able to access your care plan (treatment plan created for you by your care providers). | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Having access to trusted medical education information related to your healthcare (diagnosis, medications, etc.) | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Having access to trusted medical information or tools to help you manage your health (diet diary, exercise tracker, symptom log, etc.) | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Having information to help you understand the results of any test or result (lab, x-ray, EKG, etc.) | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Tracking important aspects of your health or treatment over time | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Understanding your insurance coverage and costs | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Managing insurance issues such as referrals, pre-certifications, coverage, approvals etc. | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
| Managing issues with medical equipment (wheelchairs, home health equipment, etc.) | Very Dissatisfied | Dissatisfied | Neither Satisfied or Dissatisfied | Satisfied | Very Satisfied |
If there is something we haven't asked about, but you would like us to consider, please enter your comments in the text field below:
[text field removed]