Wednesday, February 24, 2016

Humpday Hint: Commit to Fitness

On Wednesdays we're trying out a little something new: Humpday Hints. These are short quick tips on various topics to help with everyday life activities or information we thought might be helpful.

Make exercise part of your self-care regimen. While you don’t have to write “brush teeth” on your daily planner, you probably do write in “schedule dentist appointment.” Until exercise is established as a daily habit, you may need to write it on your calendar. “Walk 1/2 hour at lunch.” “Park at the edge of the parking lot.” “1/2 hour weight training at gym after work.”

Make a commitment to fitness.

Tuesday, February 23, 2016

Who Are Mrs. A and Mr. B?

Virtual Ability, Inc. has partnered with the University of Pennsylvania Perelman School of Medicine for the past two years on a major research project titled “>Mrs. A and Mr. B.” In fact, Virtual Ability had been involved in this research even during the brainstorming, proposal writing, and funding seeking phases. The three-year project is sponsored by the Patient Centered Outcomes Research Institute (PCORI). It is a mixed methods research design, with both quantitative (statistical analysis of numerical data) and qualitative (conceptual analysis of non-numerical data) findings.

Who are Mrs. A and Mr. B?

Mrs. A and Mr. B are not real people. They are composite characters, symbolic of people this research project focuses on. They represent people with and without disabilities who use the US healthcare system.

What is the project trying to find out?

The topic of this research is healthcare disparities for persons with disabilities. We already know that it is more difficult for some people to get high quality healthcare (for example, the elderly, rural people, people who live in poverty, people whose first language is not English).

We want to know why it is difficult for people with disabilities to get high quality healthcare. We want to know if people get worse care as they become more disabled. We want to find out if people with disabilities who get better healthcare stay healthier and are able to take care of themselves longer.

How are we doing this research?

University of Pennsylvania researchers are analyzing data from thousands of Medicare/Medicaid recipients whose opinions about healthcare were sampled between 2001 and 2010. They use statistics to look for patterns in the data.

Virtual Ability is asking three groups of people for their thoughts on the statistical findings: people with disabilities, people without disabilities, and clinicians, all from the US (so far) due to our funding source. We gather small groups of people together to discuss the emerging research findings. These groups are called focus groups. Most of them meet in Second Life, but there is also a focus group that meets at a community center in Wisconsin. The purpose of adding focus groups to the statistical research is to contextualize findings and translate them into the voice of stakeholders.

We also collect the thoughts of people from all over the world, from many different backgrounds and cultures, on the project Forum.

What is unique about this research project?

Several aspects of this research are unique, in addition to the topic.

Many of the project’s research staff have disabilities. The leaders of the project are people with disabilities. People with disabilities work with people without disabilities as equals. Non-researchers are considered equal partners because they are experts, having lived the experiences they report.

Virtual Ability has trained persons with disabilities to be research staff for this project. All research staff are CITI ethics trained. Virtual Ability employs trained persons with disabilities as focus group facilitators and as data de-identifiers. Focus group facilitators lead and record the discussion among focus group members. Data de-identifiers remove from the transcripts of focus group discussions all personally identifiable data, and transmit the cleaned transcript securely to analysts at the University.

Most of the urban focus group participants were not computer literate before this project. Many have learned how to use a computer to access health and wellness information. This has opened up a new world for them.

We provide information on the project website for three groups: the general public, other researchers, and clinicians. For the general public, we make sure that all information about the project is reported in easy-to-understand language as well as the academic language of university-based researchers. For researchers, we report our research design and emerging findings. For clinicians, we offer information on how to work with patients who have various kinds of disabilities.

What have we learned so far?

In the first year of the project, we learned that:

  • The US healthcare system is fragmented. The various healthcare providers for a single patient do not communicate adequately, so the patient is often responsible for coordinating care.
  • Self-advocacy in healthcare is very important, and not every patient is good at it.
  • Many clinicians interact in a very impersonal manner that is not appreciated by patients.

In the second year of the project, we followed up on the results of the first year. We learned that:

  • Poor healthcare coordination results because Primary Care Providers (PCPs) lack specialized knowledge, while specialists do not have enough general knowledge to consider their patient as a whole person rather than as a set of specific symptoms.
  • Electronic health records (EHR) do not seem to be consistently accessed by clinicians, resulting in poor care coordination when a patient has multiple care providers.
  • Short provider visits often result in inadequate communication.
  • People with communication disabilities (deafness, blindness) often have particularly difficult times in healthcare settings.
  • People with and without disabilities expressed frustration with insurance systems and the costs of medical care.
  • People with disabilities often face transportation and access issues in obtaining high quality healthcare.

What will we do in 2016?

During the third and final year of the Mrs. A and Mr. B research project, University researchers will continue to analyze the statistical data. Virtual Ability will continue to hold SL and physical world focus groups, to help us make research-based recommendations for improvements to the US healthcare system. We expect that our recommendations will impact initial training and continuing professional education of clinicians, as well as influence legislators and insurers. As our results continue to be published in peer-reviewed journals, these findings will be considered by policy-makers and medical care providers worldwide.

How can you participate?

Anyone, from anywhere in the world, can join in the project’s online Forum.

If you are already a Second Life resident, please consider volunteering to be part of our inworld focus groups.

Please join us on Friday, Feb. 26, at approximately 9am Pacific (following the 8:30am business meeting of the NonProfit Commons) in Second Life, when Gentle Heron will present a summary of the Mrs. A and Mr. B research and what will occur in the last year of the project.

Saturday, February 13, 2016

Citizen Science and the Great Backyard Bird Count

Contributing Author: Gentle Heron

“I’m not a scientist,” you protest. “I never did well in science classes in school.”

I beg to disagree. Anyone can be a citizen scientist.

A citizen scientist is a nonprofessional who collects data on the world around him or herself and shares the data with professional scientists. Observations of your surroundings are important scientific information, when combined with thousands of other observations from citizens all over the world. Citizen science is a way to crowd-source data collection. It’s a fun way to connect your hobbies to the advancement of human knowledge.

There are citizen science projects in the areas of astronomy, oceanography and biology. Specific project topics within biology range from moths to ants, from butterflies to birds.

This weekend (Feb 12-15, 2016) is the Great Backyard Bird Count, sponsored by Cornell University and the National Audubon Society. After creating an account, you simply observe wild birds and record their numbers and species. The minimum observation period is 15 minutes. You can watch in your backyard or travel to a park or other natural location to birdwatch. You can even watch a bird feeder outside your window from the comfort of your home.

Data collected by birdwatchers worldwide is displayed in real-time on the project website. Scientists combine all the information collected to get a close look at bird populations. They can use this information to see what is happening to our wild birds, including the effects of diseases, migration and climate change.

Go outside this weekend, watch and count the birds, and record your data as a citizen scientist. You can participate in other birdwatching projects when this weekend has passed.

Link for moths:
Link for ants:
Link for butterflies:
Link for birds:
Link for Great Backyard Bird Count: