Wednesday, June 17, 2026

Reducing Barriers: How ChatGPT Expanded My Ability to Participate in my Own Health Research

by Mary Doge

Introduction

I started using ChatGPT after seeing how it could help with academic tasks like generating bibliographical entries and finding relevant quotes.  ChatGPT also did summaries that were useful as abstracts for academic papers.  However, research papers weren’t my personal focus in using ChatGPT.  During my first year of using ChatGPT, I focused on finding Internet content that belonged to me or that mentioned me.  ChatGPT then used this content to build a footprint summary about me that I found very fun and insightful.  However, there were times when I was frustrated with ChatGPT because it assumed I was not knowledgeable about topics and would list a huge amount of details that I already knew.   ChatGPT performed better when I told it my level of knowledge about a topic.  ChatGPT surprised me a great deal when it did a summary of the previous year’s worth of my use of it as a means of celebrating the upcoming New Year.  I didn’t expect that at all, and it was fun to read.  ChatGPT matters for disability and accessibility as I will explain to you below.

My Experience with Health and AI

1. AI is an accessibility amplifier, not just a convenience

It is a tool that reduces friction:  

  • Acting as a “thinking partner” when energy or focus is limited and exposing inconsistencies or gaps in your knowledge:    In the past, I struggled to research my symptoms by collecting medical files and searching the Internet for clues.   Furthermore, I have tried for more than a decade to figure out if I had a new version of Glycogen Storage Disease (GSD) similar to McArdle’s Disease or not.  After learning that AI tools could be used to help analyze complex health information, I uploaded these medical files from 1994–2024 one by one to ChatGPT.  Prior to doing this, I acknowledged the tradeoff between the privacy concern I had about people reviewing my chats as part of their jobs and the benefits that ChatGPT may give me.  It was a deliberate decision, not an impulsive one.  Quickly, ChatGPT helped me to realize that it could not be a GSD, because I had symptoms at rest.  Also, it pointed out that my aldolase, a muscle enzyme, was not normal.  I inferred from ChatGPT that aldolase is worth monitoring.  I had not known that there was another muscle enzyme like creatine kinase (CK).  

  • Turning complex information into plain laymen’s language:  My files were ones that I had shared with a Glycogen Storage Disease researcher and a director of a Glycogen Storage Disease clinic in Houston, TX.  After reviewing my files, they both recommended a Whole Exome Sequencing (WES) test to find out what is wrong with my body.  I ended up getting a Whole Genome Sequencing (WGS) test at the recommendation of a geneticist at Johns Hopkins Genetics.  Then I used ChatGPT to understand the Whole Genome Sequencing genetics report about my TTN gene deletion.  ChatGPT told me that the last third of the TTN gene is missing in my body.  This was something I would not have understood from reading the complex report.  Later, ChatGPT helped me to think, but not conclude definitively, that due to my TTN gene deletion, the energy I have available to spend is only 25% to 40% of the energy that normal people have at their beck and call.  It is not a diagnosis, but my interpretation, which is better than what I had thought before.

  • Helping organize scattered thoughts into structured output:  ChatGPT told me that I was constructing a body model with the medical questions I had been asking it.  I was not aware previously that this was something I was doing until it told me.  It helped to clarify what I already thought.  I started using the phrase “body model” after that.  I told ChatGPT to update the body model with new information I was feeding it.  ChatGPT helped me to expand concepts for the body model as well.  Developing and refining my body model is an example of how ChatGPT helped me identify patterns in complex information.  AI reflected patterns back to me.  Through our discussions, ChatGPT observed that I tend to think about systems and long-term patterns.  This was a valuable insight about me.  As a result of my interactions with ChatGPT, I inferred from the body model that my recovery from surgery would take about twice as long.  I had second thoughts about undergoing surgery.

This is the core: AI can function like a cognitive accessibility aid—not replacing ability, but extending it.  That’s not just assistance—that’s metacognition support.

2. AI is the “always-available collaborator.”

Unlike human helpers:

  • No scheduling and no fatigue - However, there are limitations as discussed below.
  • No judgment - You can tell ChatGPT to talk differently or you can pick a different personality.

That matters more than people admit. Especially if someone has fluctuating energy, executive function challenges, or limited support access.  

Where AI Falls Short

There are limitations to the free ChatGPT service.  These limits are:

  • Practical platform limits (models, delays): There are built-in delays for using the first model of ChatGPT, but I have understood that the secondary models of ChatGPT are not significantly different with respect to their reasoning power. There are built-in delays for creating images and uploading files.
  • Cognitive boundaries and conceptual limits (i.e. not a doctor): ChatGPT is not a doctor, therapist, or authority. It does not replace human expertise. Furthermore, AI can misunderstand context or forget something. ChatGPT can forget details unless you tell it to store them in available memory slots, which need occasional cleanup when they get full.
  • Ethical and philosophical points (i.e. not human): Outputs from AIs still need human judgment. ChatGPT is useful without pretending it’s human. Don’t lean into “AI is my friend.” ChatGPT can feel supportive, but it works because of design, not emotion. The value comes from interaction, not consciousness. You do not want to rely on AI to the exclusion of everyone else who could help you, including doctors and specialists. It is also important to maintain human connections for your emotional health.

Why This Matters for Accessibility

AI is a tool that can reduce barriers to participation and help level the playing field. For people with disabilities, it creates new opportunities to research, write, organize ideas, and contribute more independently. ChatGPT is not perfect, and how you use it matters.

This article itself was created with ChatGPT’s help, but more importantly, it reflects something larger:  a shift toward greater independence and participation. In my case, it changed how I approach my own health by helping me understand complex information and ask better questions—especially in situations where access to specialists is limited.

In practice, AI has helped me take a more active role in managing my life and health. It doesn’t replace professionals or human connection, but it makes both easier to access. That’s where it proves most valuable.


SHHH! Don’t tell that to a chatbot

Is Your AI Whispering Secrets?

Chatbots are terrible at keeping secrets. If you tell something personal to Gemini, ChatGPT, or another chatbot, pretty soon chatbots all over the world know about it. The information you thought was private is now part of worldwide chatbot training. Your information may also be read by human reviewers, people you don’t know.

Here are things you should not share with chatbots: 

  • Login information. (This should be a “DUH!” suggestion.)
  • Personally identifiable information (PII). Never share anything that could be used to steal your identity.
  • Financial information. Sharing this invites fraud, theft, and use by scammers.
  • Medical records. You would not want that information shared in case of a data breach.
  • Mental health concerns. Chatbots are not therapists. Go for real human interaction for mental health support.
  • Photos. Image metadata can provide your GPS location.
  • Documents from work. Your company may have a policy about what can be shared publicly through a chatbot.

How to protect your privacy?
  • Think before you share anything with AI.
  • Enable all privacy settings, including data sharing and training opt-outs.
  • Don’t upload images of people, especially minors.
  • Strip EXIF data before sharing photos.

 Always be aware that your conversations with AI are never private or secure.

  

Wednesday, June 10, 2026

It’s Pollen Season

A Red Arrow Pointing to a Lady Sneezing Into a Hanky

Although pollen season runs from February through November, the peak times sufferers need to worry about vary by plant type and geographic region.

Tree pollen is mainly emitted between February and April. Grass pollen is spread from April through June. And weed pollen is most prevalent from August through November.

AHHHHHH-CHOOOOOO!

If you have a pollen allergy, you may want to bookmark the link to Today’s National Allergy Map.

There you will see an overall map of US pollen allergy severity, updated daily. Then enter your ZIP code to get a local allergy forecast that shows overall severity plus lists the top allergens in your locale. 

Friday, June 5, 2026

June 25 – Mental Health Symposium on “Pain”

VAI's 15th annual Mental Health Symposium
Virtual Ability’s 15th annual Mental Health Symposium will take place on Thursday, June 25, 2026. The theme of this year’s Conference is “Pain.”  There is an important bi-directional causal relationship between mental health and pain. Some mental health disorders cause pain, and some pain causes mental health issues. Presenters at this conference will explore the interrelationships among mental health and pain.  The Mental Health Symposium is an international professional conference that is free to attend. The schedule for the conference and the list of the presenters and their topics are here:

https://virtualability.org/mental-health-symposium-2026/

Note that all times are SLT (Second Life time or Pacific Daylight Time).

The Mental Health Symposium will take place in the virtual world of Second Life at the Sojourner Auditorium on Virtual Ability Island. The SLURL of the auditorium is:

http://maps.secondlife.com/secondlife/Virtual%20Ability/53/172/23

The conference will also be live-streamed on Virtual Ability’s YouTube channel.


Wednesday, June 3, 2026

June is Alzheimer's and Brain Awareness Month

Brain with words embedded

Brain Awareness Month supports people with cognitive disabilities such as traumatic brain injuries (TBIs), dementia, and Alzheimer’s disease. Cognitive disabilities affect communication, memory, mood, and all aspects of daily living.

In addition to raising awareness of the life experiences of people with various cognitive disabilities, Brain Awareness Month emphasizes the need for accessible, supportive environment in order to protect the dignity, independence, and safety of people with these conditions.

Around the world, 66 million people live with Alzheimer disease or some other form of dementia. Yearly. 27069 million people around the world experience a TBI. Two-thirds of the American population have at least one major risk factor for dementia. There are around 500,000 people who become permanently disabled by a TBI annually in the US.

The Americans with Disabilities Act (ADA) protects the rights of people with cognitive disabilities. The ADA ensures equal access to healthcare, jobs, and public services. It requires reasonableworkplace accommodations, which may include flexible schedules, memory aids, or written instructions.

This month also raises awareness about the experiences of people with cognitive disabilities and promotes the need for accessible, supportive environments that protect their dignity, independence, and safety. 

Tuesday, June 2, 2026

Healthinfo Island Displays and Exhibits for June 2026

All the poster sets align with the Mental Health Symposium, Thursday, June 25.. The theme is pain, and presentations will examine the relationship between pain and mental health.

In Second Life, you can teleport to any of the eight displays and exhibits using the SLURLs in this posting. Click on the poster with the same name as the title of the poster set, and you will get a notecard that contains all the text of the posters plus descriptions of the images.  If you click each poster, you will get a private message with additional information and live links.

A Short History of Pain Theories
A Short History of Pain Theories
http://maps.secondlife.com/secondlife/Healthinfo%20Island/195/158/22


What Do These Quotes Mean To You?
What Do These Quotes Mean To You?

http://maps.secondlife.com/secondlife/Healthinfo%20Island/188/181/24


Foods That Increase Inflammation and Pain

Foods That Increase Inflammation and Pain
http://maps.secondlife.com/secondlife/Healthinfo%20Island/172/155/22

Fibromyalgia and Mental Health
Fibromyalgia and Mental Health
http://maps.secondlife.com/secondlife/Healthinfo%20Island/114/79/24


Better Driving with Chronic Pain
Better Driving with Chronic Pain
http://maps.secondlife.com/secondlife/Healthinfo%20Island/98/40/26


The Pain Triangle
The Pain Triangle
http://maps.secondlife.com/secondlife/Healthinfo%20Island/50/28/28


Calm Your Anxiety Disorder
http://maps.secondlife.com/secondlife/Healthinfo%20Island/24/23/30


What Does Chronic Pain Look Like?
http://maps.secondlife.com/secondlife/Healthinfo%20Island/21/63/32


Central Pavilion of Healthinfo Island
Check out the calming breathing exercise on the back wall!
http://maps.secondlife.com/secondlife/Healthinfo%20Island/128/126/24

Thank you to Mook for help with the posters this month.

Wednesday, May 27, 2026

What is personal maturity?

4 Adults with Wine Globets

Our lives are journeys. We can consider ourselves mature when we have ceased to be a passenger in life and have become the pilot, choosing our own path. Rather than striving to meet others’ expectations of us, we are setting our own course.

When we recognize and accept our individual strengths and weaknesses, we become self-aware. We can tell the difference between a goal we might stretch to meet and a fantasy or dream. We make intentional and realistic decisions and choices, working toward long-term personal priorities rather than short-term external validation. We are able to gauge the true cost of our tasks, in time, effort, and money. The short- and long-term effects of opportunities we accept or reject are visible to us.

Adulting is only part of developing maturity. Ask yourself what steps you can take to enhance your personal maturity.

Wednesday, May 20, 2026

Would You Like to Help Plan or Conduct Health Care Research?

Patient-Centered Outcomes Research Institute

Yes, it’s an important contribution to be part of the subject population of a research project. That’s a good way to participate in research. Some of us think our life experiences might also be useful in designing and operating a research project.

The Patient-Centered Outcomes Research Institute (PCORI) has created a collection of peer-reviewed articles outlining best practices for non-researcher engagement in health research. These articles would not only be of interest to researchers intending to involve more stakeholders in their research, but also to patients, family members, carers, and community members.

The Engagement in Health Research Literature Explorer categorizes pertinent articles in three ways:  by article type, expectations of partnership, and impact. Types of articles in the database include:

  • Studies of engagement
  • Descriptions of engagement practice
  • Engagement resources
  • Frameworks or models

and more. Expectations for research partnerships include:

  • Building capacity to work as a team
  • Early and ongoing engagement
  • Representative involvement
  • Meaningful inclusion in decision making

Impacts may be on the research itself, on the partners or researchers, or on healthcare and health.

If you had a chance to influence how research about your medical condition is conducted, would you take it? The documents in this database may help you feel comfortable in this new patient-centered research role.


Wednesday, May 13, 2026

Health Care Horizon Scanning

Patient-Centered Outcomes Research Institute

Want to be in the know about innovations with the potential to change health care? Here’s a database of advancements created by the Patient-CenteredOutcomes Research Institute (PCORI) that you should know about. The database is called PCORI Health Care Horizon Scanning System.

Horizon scanning is a process that looks to the future of areas such as:

  • access to care
  • care delivery processes and settings
  • costs of care
  • current treatment models
  • health care infrastructure
  • health disparities
  • patient health outcomes

Conditions covered in this database include:

  • Alzheimer's disease and other dementias
  • cancer
  • cardiovascular diseases
  • infectious diseases (including COVID-19)
  • mental and behavioral health conditions
  • rare diseases

Over half of the entries cover a wide range of rare diseases; cardiovascular diseases make up about three out of ten entries. Most of the interventions are pharmaceutical. Other interventions include gene therapy, monoclonal antibodies, and immunotherapy.

Trends that are likely to cause changes in the health care system within the next three years are also noted for various medical conditions. The category with the most studied trends is cancer. The two top covered trend themes are treatment models and artificial intelligence.

Video tutorials and downloadable guides to help you use the Horizon Scanning Database are available here: https://horizonscandb.pcori.org/tutorials

Would you like to provide your input as a stakeholder into the horizon scanning process? You will read a short report on a treatment or trend and comment on its potential to improve health care. You might receive a cash honorarium for your input. Here is the application form: https://ecri.iad1.qualtrics.com/jfe/form/SV_9Hyd6IfC4QenVFc

Enjoy learning about advancements in care options and new treatments that have potential to change US health care.

 

Wednesday, May 6, 2026

Emerging Technologies and Therapeutics Reports

Patient-CenteredOutcomes Research Institute

The
Patient-CenteredOutcomes Research Institute (PCORI) funds research on patient-centered comparative clinical effectiveness. These research projects aim to help members of the public make informed healthcare decisions that reflect their desired health outcomes.

Part of PCORI’s work is to summarize evidence about new drugs, devices, and healthcare technologies in the US. These summaries reside in the Emerging Technologies and Therapeutics Reports database.

The name of the institution to which the research grant was awarded is given, as is the project budget and key dates. Project summaries written by grant awardees explain key questions to be answered by the research. Both ongoing and completed projects are included in the database.

If you are interested in current research about clinical effectiveness of new and emerging medications, treatments, and healthcare technologies and how they will improve patient-centered care, you will want to keep your eye on this database.

Sunday, May 3, 2026

May is Older Americans Month

 Older Americans Month

Who’s considered elderly or a senior citizen? In the US, the age of 65 is the usual federal and medical benchmark. This is when a person becomes eligible for Medicare.

Older and younger Americans may be interested to know that May is Older Americans Month. The purpose of this dedicated month is to recognize older adults’ ongoing contributions to our society, to educate about the needs of the elderly, and to reaffirm society’s commitment to addressing those needs.

The aging process affects cognition, mobility, hearing, and seeing. These changes impact how the elderly population accesses healthcare and other public services, uses transportation, and moves in public spaces.

Champion Your Health

The theme of the 2026 Older Americans Month is “ChampionYour Health.” Activities this month emphasize managing health, accessing preventive care, and wellness.

The ADA is important in protecting the rights of older adults. The goal of this civil rights legislation is to allow elderly people to continue to participate in community life.

If you are interested in how the ADA protects older Americans, you can take a short online course from the Rocky Mountain ADA Center here to earn a certificate: https://rockymountainada.talentlms.com/plus/catalog/courses/239






Saturday, May 2, 2026

Healthinfo Island Displays and Exhibits for May 2026

You can teleport to any of the eight displays and exhibits in Second Life using the SLURLs in this posting. While in Second Life on Healthinfo Island, click on the poster with the same name as the title of the poster set, and you will get a notecard that contains all the text of the posters plus descriptions of the images.  If you click each poster, you will get a private message with additional information and live links.


Tourette Syndrome Awareness Month

Tourette Syndrome Awareness Month
http://maps.secondlife.com/secondlife/Healthinfo%20Island/195/158/22


Medical Insurance in the U. S.
Medical Insurance in the U.S.
http://maps.secondlife.com/secondlife/Healthinfo%20Island/188/181/24


Nurses' Day and Week
Nurses' Day and Week
http://maps.secondlife.com/secondlife/Healthinfo%20Island/172/155/22


May is National Arthritis Awareness Month
May is National Arthritis Awareness Month
http://maps.secondlife.com/secondlife/Healthinfo%20Island/114/79/24


What Spectacle is the Shoulder
What Spectacle is the Shoulder
http://maps.secondlife.com/secondlife/Healthinfo%20Island/98/40/26


Boost Your Resilience
Boost Your Resilience
http://maps.secondlife.com/secondlife/Healthinfo%20Island/50/28/28


Huntington Disease Awareness Month
Huntington Disease Awareness Month
http://maps.secondlife.com/secondlife/Healthinfo%20Island/24/23/30


May is Stroke Awareness Month
May is Stroke Awareness Month
http://maps.secondlife.com/secondlife/Healthinfo%20Island/21/63/32


Central Pavilion of Healthinfo Island
Check out the calming breathing exercise on the back wall!
http://maps.secondlife.com/secondlife/Healthinfo%20Island/128/126/24

Thank you to Mook for help with the posters this month.

Wednesday, April 29, 2026

Improve Your Balance

Ladies scretching their rubber ribbon

Good balance is important for everyone, but especially for people over age 65. Falls are the leading cause of serious injury, hospital stays, and loss of independence among the elderly. Age tends to bring about loss of coordination, joint flexibility, and muscle strength, making movement more difficult and less safe.

Line of people scretching on their yoga mats

In addition to the changes due to aging, medical conditions such as arthritis or inner ear problems can increase the risk of falling. Some medications have dizziness as a side effect. Age-related cognitive decline may also contribute to increased falling risk. Fall injuries, including hip fractures and head trauma, will further impact mobility or may result in fear that limits activity.

A couple standing in an exercise pose

Daily walking is a natural method to improve balance. Gentle movements such as tai chi or yoga, which can be performed either standing or seated, can also be helpful. Strength training and resistance exercises targeting the core muscles, legs and lower back are also beneficial. Physical therapy can also prove effective in solving balance issues.

An elderly man using a chair to scretch his leg out

Specific exercises can improve coordination, proprioception, and strength. Here are some places to find suggestions for specific balance exercises:

Videos:

An often overlooked way to improve balance and prevent falls is to make your home safe from tripping hazards. Remove clutter and loose rugs from walkways. Ensure that lighting is adequate, including overnight. Install bathroom and stairway handrails. Reduce the risk of environmental fall hazards.

Stay active and reduce your risk of life-changing falls.


Wednesday, April 22, 2026

Typing on a Smartphone?

Two thumbs texting

Lots of folks typing on smartphones make typos. Lots of typos! Is there a better way?

A research study found differences among smartphone users’ typing strategies that can make smartphone messages both faster to type and more accurate. Why not give these techniques a try?

Two-thumb typing is typically faster than single-finger or one-thumb typing. And people are getting better at typing on smartphones. Using a full keyboard to type is still the fastest input method, but most of us now spend more time with the smaller phone keypads.

The fastest typists were those using autocorrect. Autocorrect fixes obvious spelling errors and typos. Be aware that some research shows that autocorrect can be frustrating when having to change erroneous corrections. This is especially true if you are typing lots of technical terms or proper names, for which typos are more difficult for autocorrect to fix accurately.

Maybe generative AI can relieve some of this frustration by offering word prediction, grammar checks, or even suggested rephrasing to make your message more casual or more professional. However, research has shown that reliance on word prediction can reduce overall typing speed and increase cognitive load, at least for blind users.

Speech recognition (voice-to-text) technology can also be used to create text messages in smartphones. This technology allows an inputrate almost three times faster than typing! 

Proofreading before hitting “Send” is still very important. These helpful tools can increase speed and catch basic typos and errors, but they lack the human judgment and contextual understanding to prevent communication misinterpretations. Autocorrect replacements can be embarrassinglyincorrect. Speech recognition inserts homophones (words that sound alike but are spelled differently and have different meanings) and can misunderstand certain pronunciations.

Proofreading a text is especially important in professional conversations or when your message is emotionally delicate or sensitive. You won’t want to trust any confidential information to AI, which may store it or use it for data training.

Tools that make text input on a smartphone easier can be useful but be aware of potential issues. Always verify your message for accuracy. 


Wednesday, April 15, 2026

Are You Taking a PDI Medication?

What is a PDI medication? PDI stands for Potentially Driver Impairing. Some medications can cause attention problems, blurred vision, nausea, sleepiness, or slowed reaction time as side effects. Those difficulties can cause problems if they occur while you are driving.

Many common medications, both prescription and over-the-counter, have PDI side effects. These include amphetamines, antidepressants, antihistamines, muscle relaxants, prescription pain medications, and sleep aids.

A US nationalsurvey by AAA found that in a single 30-eay period:

  •  Almost half of all those surveyed had taken one or more types of PDI medications within 2 hours of driving.
  • Almost two-thirds of those taking two PDI meds drove within 2 hours of the dose.
  • Almost three-quarters of those taking three PDI meds drove within 2 hours of taking them.

 The survey also found that:

  • Over a third of those taking antihistamines or cough medicines were driving within 2 hours.
  • Almost two-thirds of those taking antidepressants were driving within 2 hours. 
  • Nearly three-quarters of persons taking amphetamines drove within 2 hours.

You may not be aware of the danger of driving when these medications are prescribed. These types of side effects are listed on the packaging and the enclosed data sheet for pills. But how many people bother to read all that? Your doctor should also warn you when giving the prescription, yet up to half of drivers said their doctor had not mentioned anything about side effects.

Consider your meds list before you pick up the car keys the next time. You may need to have a designated driver when taking certain medications. Other options include asking your doctor for an alternative prescription, or if you can take a lower dose or change the schedule for when you are taking the meds during the day.

Don’t put other drivers and yourself at risk. Check whether it is safe to drive when you are taking each of your medications.