🌐 Patients Are Using GenAI for Health—But Who’s Teaching Them How?

Generative AI tools like ChatGPT are rapidly changing how we access health information. Millions of people—especially younger adults—are turning to AI not just for curiosity, but for help managing real-life health concerns. From understanding symptoms to finding emotional support, GenAI is now a quiet companion for patients navigating the gaps between doctor visits.

But as this technology evolves, we must ask:

Who's guiding patients on how to use it wisely, safely, and effectively?

Even more importantly:

How can doctors teach patients how to use GenAI… if they aren’t using it themselves to manage their own health or stress?

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📊 The Rise of Patient-Led GenAI Use

Recent data shows:

• 23% of U.S. adults had used ChatGPT as of early 2024.
• 1 in 5 users accessed GenAI for health and wellness-related questions.
• Usage is skewed toward younger adults (43% of 18–29-year-olds have tried ChatGPT) while older adults lag far behind (only 6% of adults over 65).

And yet, across all age groups, people are using GenAI to:

• Look up symptoms
• Make sense of confusing diagnoses
• Seek emotional support
• Understand medications
• Ask sensitive questions they might hesitate to bring up with a doctor

They’re doing it with no formal training, often relying on trial and error, social media tips, or guesswork.

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⚠️ The Silent Risk: Guidance Isn’t Catching Up

While GenAI adoption is accelerating, healthcare education is lagging behind. Patients are interacting with tools like ChatGPT for deeply personal, often life-impacting reasons—but without a roadmap.

The risks are real:

• AI can hallucinate or provide medically inaccurate answers
• Patients may over-trust or misinterpret suggestions
• Vulnerable populations with lower digital or health literacy may be left behind

Yet research shows: 

🟢 Patients want professional guidance.  

🟢 They trust AI more when it’s recommended by a provider.  

🟢 They’re ready to learn—if someone will teach them.

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🩺 Doctors Are Learning GenAI—But Not to Teach Patients (Yet)

To be fair, clinicians are under their own pressure. Medical schools, hospitals, and health systems are starting to offer AI training—for note-taking, triage, diagnostic aid, and research. Some even have AI literacy modules and GenAI-focused continuing education.

But very few:

• Use GenAI for their own health or stress management
• Receive training on how to teach patients to use ChatGPT or similar tools
• Feel comfortable prescribing AI as a self-care companion between visits

Until that changes, a major opportunity remains untapped.

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📘 A Book to Bridge the Gap

That’s why I created: 👉 How to Build Your Personalized Holistic Digital Health Companion

This is the first how-to book designed to help people—especially those with chronic conditions or limited access to care—learn how to use ChatGPT as a 24/7 health and life companion.

In plain language, this book teaches readers how to:

• Track and reflect on symptoms and emotional patterns
• Use structured prompts to support health goals
• Ask better questions before seeing a doctor
• Explore their concerns in a non-judgmental space
• Navigate stress, overwhelm, and daily challenges holistically

It’s also a tool for healthcare professionals who want to support patients without having to reinvent the wheel.

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🔮 What the Future Could Look Like

Imagine this:

• A patient with chronic pain uses ChatGPT to log symptoms, ask questions, and build a summary for their next doctor visit.
• Their doctor, familiar with the tool, reviews the chat, fills in the gaps, and recommends reliable follow-up prompts.
• The patient leaves the office feeling empowered, understood, and with a 24/7 digital companion that continues the care journey.

That future isn’t far away. But it requires action now—from both sides.

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🤝 Let's Co-Create the Future

If you’re a clinician, educator, digital health innovator, or just someone who cares about empowering people with better tools, here’s what we need:

✅ More GenAI literacy training—for both patients and professionals

✅ Bridging personal and professional use—so doctors can teach from experience

✅ Human-in-the-loop models—AI assists, but people lead

✅ Equity and safety at the core of every GenAI deployment

This moment is our chance to reimagine care—not as a series of disconnected appointments, but as an ongoing, supported experience where humans and technology work together for well-being.

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🔗 How to Build Your Personalized Holistic Digital Health Companion 📘 https://www.amazon.com/dp/B0FC3VTB9C

Let’s build the future of health—together.

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Thanks to Generative AI, Google Bard/Gemini and ChatGPT, for help preparing this article.

If you like my work, please check out my Author Page.  Thanks!

Disclaimer - For informational purposes only.  This article is not a substitute for professional medical advice.  Always consult a qualified healthcare provider.  Additional Disclaimers here.

🧾 The Next Logical Step in Patient Access: Redacted Summaries for LLM Tools

 

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EHR leaders—Epic, Cerner/Oracle, Athenahealth, and others—it’s time to offer patients a safe way to use their own records with tools like ChatGPT.

Patients are already downloading their records, pasting them into ChatGPT, and asking:

“What could this mean?” “What patterns am I missing?” “How can I make the most of my next doctor visit?”

They’re not trying to bypass doctors. They’re trying to better understand themselves and have more effective conversations in the limited minutes they get with their care teams.

But right now, there’s no safe way to do this—because EHRs don’t provide a redacted, AI-ready export.

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🔍 Patients Are Already Using ChatGPT for Health

Whether we like it or not, patients are using ChatGPT to:

• Summarize confusing medical notes
• Explain lab values in plain language
• Track symptoms and medication effects
• Reflect on their emotional and physical experience
• Prepare better questions for their providers
• Understand patterns that emerge over time

This is happening right now, across Facebook groups, Reddit threads, chronic illness communities, and personal health blogs. They’re doing it because it’s helpful, fast, and available 24/7.

But they’re also doing it unsafely—copying and pasting full, unredacted records into tools that are not HIPAA-compliant.

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🔐 The Missing Feature: Redacted Export for AI Tools

What if EHRs added just one more button inside the patient portal?

“Download a redacted summary for AI use (ChatGPT, Claude, Gemini, etc.)”

This export would:

• Remove names, dates of birth, MRNs, and contact info
• Convert precise dates into general ranges ("early 2023")
• Preserve symptoms, test results, diagnoses, and medications
• Optional: Let the patient choose to include or exclude specific items
• Include a clear advisory: “Use responsibly—this is not a substitute for medical care”

This would allow patients to safely explore their own story and generate insights they can bring back to their doctor.

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🧠 What ChatGPT Can Do with Redacted Medical Records

Before diving into the specifics, it’s worth emphasizing that the real magic happens when we combine structured data with human context.

💬 EHR + Narrative = Insight We’ve Been Missing When redacted EHR records are combined with a patient’s full narrative—their symptoms, feelings, hunches, frustrations, and life story—something powerful happens. ChatGPT can bridge the gap between structured data and lived experience. It doesn’t just interpret lab values—it listens for meaning, patterns, and blind spots. It can hold the clinical and the emotional side-by-side and say, “Here’s what might be going on.” This fusion of clinical records + narrative medicine creates a more human, more insightful, and more actionable understanding of health—just what’s been missing in rushed, fragmented care.

Now here’s how ChatGPT helps in concrete, practical ways:

1. 🧾 Summarize and Simplify

• Extracts key points from dense medical language
• Converts jargon into understandable explanations
• Organizes scattered notes into a coherent picture

🟢 Patients gain clarity. Doctors receive more focused, relevant questions.

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2. 🔁 Spot Patterns and Hypotheses

• Detects connections between physical symptoms, emotional states, and life events
• Correlates lab trends with reported symptoms
• Suggests potential explanations to explore—not diagnoses, but hypotheses

🟢 This can help surface missed clues in complex or chronic cases.

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3. 🗂️ Build Timelines and Track Changes

• Aligns medical events (labs, meds, flare-ups) into a story
• Highlights recurring patterns and outliers
• Flags what’s better, what’s worse, what’s new

🟢 Doctors don’t need to scan 20 pages. They get a distilled update with context.

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4. ❓ Prepare Better Questions for Visits

• Based on the patient’s story, ChatGPT can suggest high-value questions:

🟢 This creates a stronger foundation for shared decision-making.

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5. 🧘 Reflect the Whole Person

• Incorporates emotional impact, stressors, trauma, and quality of life
• Supports narrative medicine by helping patients find meaning in their journey
• Re-humanizes data by aligning it with what matters to the patient

🟢 Patients feel seen, and doctors gain insights into factors beyond labs and vitals.

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6. 📎 Support Doctor-Patient Communication

• Prepares a one-page update before appointments
• Helps patients explain their situation more clearly
• Reduces the time doctors spend “catching up” or pulling scattered threads together

🟢 Everyone gets more value from the limited face-to-face time.

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🔄 EHR Vendors Already Have the Building Blocks

Most EHR platforms already support:

• FHIR APIs with scoped access
• Blue Button 2.0 patient downloads
• Developer tools for controlled access to subsets of health data
• De-identified research environments (e.g. Epic Cosmos)

Now it’s time to give patients a usable version of their story—safely, responsibly, and on their terms.

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🧭 This Is About Empowerment, Not Diagnosis

Let’s be clear:

• ChatGPT is not a doctor
• This is not about replacing clinical reasoning
• This is not about shifting liability

It’s about helping patients become better-informed participants in their own care.

And that starts with giving them a version of their own records that they can safely explore, understand, and reflect on—without risking their privacy.

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✍️ Want to See This in Action?

I wrote a guide for patients, caregivers, and health coaches on how to use ChatGPT safely and effectively between doctor visits.

📘 How to Build Your Personalized Holistic Digital Health Companion: Using ChatGPT to Manage Symptoms, Emotions, and Life with 24/7 Support ➡️ https://www.amazon.com/dp/B0FC3VTB9C

It walks through:

• How to redact records before sharing with ChatGPT
• How to journal, track symptoms, and prepare summaries
• How to build a personalized ChatGPT profile for ongoing support

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🔑 The Ask

To EHR vendors, portal designers, and digital health leaders:

Please consider adding a redacted, AI-safe export to patient portals. It’s a small change with the power to transform understanding, communication, and agency—safely.

Patients are ready. Let’s give them the tools to use their own data with care, curiosity, and confidence.

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Thanks to Generative AI, Google Bard/Gemini and ChatGPT, for help preparing this article.

If you like my work, please check out my Author Page.  Thanks!

Disclaimer - For informational purposes only.  This article is not a substitute for professional medical advice.  Always consult a qualified healthcare provider. Additional Disclaimers here.

From the Clinic to the Living Room: How Patients Are Leading a Healthcare Revolution Between Visits

In today’s rapidly evolving healthcare landscape, something extraordinary is happening—patients are becoming the primary drivers of their own health management. They're not waiting for appointments. They're tracking, analyzing, questioning, and in many cases, leading.

This shift is changing everything we thought we knew about the patient-provider relationship—and the healthcare system is racing to adapt.

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🔍 How People Are Managing Health Between Visits

Especially for individuals with chronic conditions, the time between doctor visits is where most healing, managing, and decision-making actually happens. Today, this space is being filled with:

• Wearables and home monitoring for heart rate, sleep, glucose, blood pressure, etc.
• Apps and AI tools (including ChatGPT) to track symptoms, journal, and prepare for appointments
• Online communities for shared experiences and emotional support
• Telehealth and remote care for fast access when in-person care is unavailable
• Education and self-management programs empowering patients to take control

Even for those without access to traditional care, options like community clinics, public health departments, and free AI tools are helping fill critical gaps.

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🧠 What It Means for Healthcare Professionals

Doctors aren’t just treating diseases—they’re working with a new kind of patient: informed, tech-enabled, and increasingly confident.These patients come armed with wearable data, symptom trackers, and AI insights from tools like ChatGPT—ready to co-lead their care.But with empowerment comes complexity. Patients are managing information overload, home testing fatigue, and the emotional weight of interpreting their own data. They need doctors not just for answers, but for context, compassion, and clarity.

Many professionals are responding by:

• Shifting from authority figures to collaborative coaches
• Learning to interpret and integrate patient-generated data
• Welcoming AI not as competition, but as a clinical support system
• Developing new skills in digital literacy, empathy, and shared decision-making

Still, challenges remain: data overload, digital divide, privacy concerns, misinformation, and the emotional labor of navigating patient anxiety in a tech-saturated world.

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🔮 Where It's Headed

We’re witnessing the rise of a hybrid care model, where human expertise and digital insight walk side by side. The future likely includes:

• AI-powered patient summaries and pre-visit prep
• Integrated dashboards for wearables and logs
• Digital health navigators to guide patients through complex data
• Curated apps and AI tools recommended by clinics
• Ethical frameworks to ensure fairness, safety, and access for all

Most importantly, we’ll see a healthcare system that is less episodic and more continuous—a dynamic, daily partnership between people and their providers.

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❤️ The Real Transformation: Trust, Not Just Tech

At the core of this shift isn’t technology—it’s trust.

Patients don’t just want tools. They want to be heard, understood, and respected as partners in their care. The tools simply amplify what’s possible when human dignity is placed at the center.

🌀 This Isn’t an Upgrade. It’s a Paradigm Shift.

What we’re seeing isn’t just a new app here or a better device there. This is a full-scale paradigm shift in how health is understood, managed, and delivered. For decades, change in healthcare has been slow—incremental at best. But that era is ending.

The convergence of AI, patient empowerment, wearables, digital tools, and decentralization isn’t a trend—it’s a tipping point.

This transformation is already happening in living rooms, community forums, symptom logs, and virtual conversations around the world. Patients are no longer waiting. They are building their own systems of support, clarity, and self-care—with or without the formal healthcare system at the table.

The question for healthcare professionals and institutions now is simple: Will you lead this shift—or be left trying to catch up to it?

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🚀 Are You Leading This Change—or Catching Up To It?

Patients, caregivers, clinicians, tech innovators, and health advocates—together, we are co-creating the future of care.

If you’re working in this space, experimenting with AI for symptom tracking, integrating patient-generated data, or helping underserved communities access care—let’s connect. We’re building something bigger than an app. We’re building a new model of care.

Many patients today are using ChatGPT to log symptoms, interpret lab results, and prepare for visits. It’s not replacing doctors—it’s helping people become better prepared and more engaged between visits.The question is no longer whether patients will use tools like this—it’s whether the healthcare system will support and guide them in doing so safely and meaningfully.

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📘 Want to learn more about how people are using AI and tools like ChatGPT to manage their health between visits? Check out How to Build Your Personalized Holistic Digital Health Companion—a practical guide for everyday people navigating their health in a digital world.

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Thanks to Generative AI, Google Bard/Gemini and ChatGPT, for help preparing this article.

If you like my work, please check out my Author Page.  Thanks!

Disclaimer - For informational purposes only.  This article is not a substitute for professional medical advice.  Always consult a qualified healthcare provider. Additional Disclaimers here.

💡 Who’s Using ChatGPT to Manage Their Health? A Look Beyond the Clinic

 As generative AI tools like ChatGPT continue to evolve, a growing number of individuals are turning to them—not just for work or entertainment, but for something far more personal: managing their health.

While AI is no replacement for professional care, many people are using it between doctor visits or when access to care is limited. From symptom tracking to emotional support, ChatGPT is emerging as a 24/7 companion for wellness, insight, and self-management.

📋 Groups Using ChatGPT for Health Self-Management

Here are some of the key groups currently using ChatGPT to support their health journeys:

🏥 People Without Regular Primary Care Access

Often underserved, this group uses ChatGPT to fill gaps—asking health questions, researching conditions, and finding ways to cope when traditional care is unavailable or unaffordable.

👩💻 Younger Generations (Aged 18–44)

Early adopters of technology, many younger users are turning to AI for personalized health information, mental health support, and fitness tracking.

🌍 Individuals with Limited Health Literacy or Non-English Backgrounds

AI offers simplified explanations, language translation, and clarity—bridging barriers in health communication.

👩 Women (Especially Ages 35–44 and 55+)

Women in these age groups are among the most active users for high-risk health queries, often balancing caregiving and personal health needs.

♿ Patients with Chronic Conditions

Living with conditions like fibromyalgia, diabetes, ME/CFS, or autoimmune disorders, many use ChatGPT to:

• Track symptoms
• Summarize information for doctors
• Explore lifestyle adjustments
• Reflect on emotional wellbeing

🧠 Neurodivergent Individuals (ADHD, Autism, OCD, Anxiety)

Users in this group benefit from AI’s ability to:

• Structure daily tasks
• Reduce overwhelm
• Script conversations
• Manage emotional regulation

👵 Older Adults Managing Multiple Conditions

Often with caregiver assistance, older users are using ChatGPT for:

• Medication tracking
• Appointment prep
• Journaling life reflections
• Alleviating loneliness

🧘 Mental Health & Trauma Survivors (Non-clinical use)

From PTSD to anxiety, many find AI helpful for:

• Safe-space journaling
• Cognitive reframing
• Psychoeducation
• Creative expression

👪 Caregivers & Parents

This group uses ChatGPT for:

• Home care research
• Daily health logs
• Managing behavior routines
• Emotional support during burnout

🧬 Health-Conscious Individuals & Biohackers

These self-optimizers leverage AI for:

• Custom fitness plans
• Sleep and HRV tracking
• Lifestyle experiment design
• Nutrition and supplements

📚 Educators Teaching Self-Help or Wellness

Coaches and authors use ChatGPT to:

• Create journals and wellness prompts
• Guide clients in self-discovery
• Build interactive check-ins and affirmation tools

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🧑💻 Bonus: Online Communities Supporting These Uses

💬 Reddit

• r/ADHD
• r/CFS
• r/selfimprovement
• r/ChatGPT

📘 Facebook Groups

• “ChatGPT for Health”
• “Using AI for Wellness”
• Long COVID support groups

🌐 PatientsLikeMe Some members have begun integrating AI into their symptom logs and wellness tracking.

🎥 YouTube & Medium Dozens of individuals share their experiences using ChatGPT to support chronic illness, mental health, and personal growth.

👩⚕️ Doctors Using ChatGPT for Their Own Health

Are you a doctor who's using ChatGPT to support your own health and well-being? Or maybe you're helping your patients learn how to use ChatGPT to manage their symptoms, emotions, or daily health tasks between visits—giving them a way to help themselves 24/7?

If so, we’d love to hear from you. Your experience could help shape the future of empowered, AI-supported care.

Let us know how you’re using these tools—for yourself or your patients. Thank you!

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🚀 Why It Matters

AI is reshaping how people understand and manage their health—not by replacing care, but by filling the space in-between. Whether you're a patient, caregiver, educator, or advocate, these tools are giving individuals more agency, more clarity, and more support than ever before.

If you're part of this movement—or want to be—I'd love to connect.

🧠💬 Learn more in my book: 📘 How to Build Your Personalized Holistic Digital Health Companion ➡️ https://www.amazon.com/dp/B0FC3VTB9C (FREE on June 14/15 2025, then at the regular low price of $4.99)

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Thanks to Generative AI, Google Bard/Gemini and ChatGPT, for help preparing this article.

If you like my work, please check out my Author Page.  Thanks!

Disclaimer - For informational purposes only.  This article is not a substitute for professional medical advice.  Always consult a qualified healthcare provider. Additional Disclaimers here.

🧠 How to Get Personalized Answers from ChatGPT Using Profiles (Step-by-Step)

 What if you could teach ChatGPT who you are—your needs, your situation, your goals—and get answers tailored to you every time?   

You can. And it starts with using a simple “profile.”

Whether you're managing your health, writing your memoir, changing careers, or just trying to stay organized, using a custom profile in ChatGPT (or any AI assistant) helps you move from generic advice to personalized guidance.

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🛠️ What’s a Profile?

A “profile” is a brief written summary of your:

• Life situation
• Goals
• Preferences
• Challenges
• Context

You share it with ChatGPT in a new chat to help it give better, more relevant responses.

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✅ Step-by-Step: How to Use a Profile in ChatGPT (Free or Paid)

1. Start a New Chat

Go to ChatGPT and open a brand-new conversation.

2. Paste in Your Profile

This should include the 6 Core Questions:

The 6 Core Questions for Your Profile

1.      Where do I live, and what’s my environment like?

2.      What’s going on with my body (symptoms, energy, sleep)?

3.      How’s my emotional and mental state lately?

4.      What’s going on spiritually or with meaning/purpose?

5.      What medications, supplements, or treatments am I using?

6.      What are my goals—what would I like help with?

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🧾 Example: A Simple Health Related Profile (but make your own just for you!)

I live in a mid-sized city with moderate access to healthcare and public parks. I work from home and sometimes feel isolated but appreciate the flexibility.

I deal with low energy, occasional anxiety, and digestive issues. My sleep is often broken, especially when I’m stressed.

Emotionally, I’m stable but tend to overthink and struggle with motivation. Spiritually, I’m searching for more purpose and trying to reconnect with nature and gratitude.

I take a multivitamin, a probiotic, and occasionally use over-the-counter sleep aids.

My goal is to get better at managing stress, improve my sleep and energy, and stay on track with healthy habits like walking, writing, and reducing sugar.

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⚠️ A Note About Privacy

Don’t include highly sensitive personal data, such as:

• Your full legal name
• Date of birth
• Social Security number
• Health insurance details
• Home address
• Names of doctors or other identifiable individuals
• Account numbers or private health identifiers (PHI)

✅ Example of safe sharing:
“I take a thyroid medication and a blood pressure pill.”

❌ Too sensitive:
“I take Synthroid 50 mcg prescribed by Dr. Smith at Oakview Clinic, patient ID 28374.”

Keep things general, especially in the free or public versions of ChatGPT. Use your judgment—treat it like journaling in a smart notebook, not submitting medical records.

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3. Add This Instruction at the End

“Please remember this profile for this chat and use it to give me personalized responses based on who I am and what I’ve shared. I may ask follow-up questions about symptoms, emotions, or decisions.”

4. Ask Naturally

Now you can ask questions and get responses tailored to you. No more “one-size-fits-all” answers.

Example:

·         “Can you help me create a sleep routine based on my profile?”

·         “Why might I feel more tired after eating lunch?”

·         “Help me find low-effort meals that fit my energy and digestion needs.”

 

Please Note - These are just examples to get you started, but by following these tips, you can create prompts that are even more effective for generative AI:

1.    Be Specific: Clearly state your request.  Don't be vague; tell the AI exactly what you want.

2.    Add Context: Give background info.  The more the AI understands, the better the response.

3.    Experiment & Refine: Don't be afraid to play around!  Try different phrasings to see what works best.

 

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💡 Tips for Ongoing Use

• Stick with the same chat thread in the free version for continuity.
• In ChatGPT Plus (Projects), memory persists across multiple chats inside the same project.
• You can make multiple profiles: a general one, and others for specific goals (e.g., health, creativity, spiritual growth, productivity).
• The more context you give ChatGPT, the more it can truly help you—safely, respectfully, and personally. 

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🎯 Real-Life Applications

This approach can help you with:

• Managing health or chronic conditions
• Tracking emotions, habits, or symptoms
• Creating personalized wellness or learning plans
• Reflecting on decisions or transitions
• Coaching yourself through challenges
• Supporting others (as a caregiver, advocate, or friend)

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📘 Want to Go Deeper?

If you'd like more detailed guidance, including examples, templates, and how to use this method for health and healing, check out my book:

How to Build Your Personalized Holistic Digital Health Companion: Using ChatGPT to Manage Symptoms, Emotions, and Life with 24/7 Support
📖 https://www.amazon.com/dp/B0FC3VTB9C

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Thanks to Generative AI, Google Bard/Gemini and ChatGPT, for help preparing this article.

If you like my work, please check out my Author Page.  Thanks!

Disclaimer - For informational purposes only.  This article is not a substitute for professional medical advice.  Always consult a qualified healthcare provider.  Additional Disclaimers here.