Dr. You

Understanding your treatment options is crucial when you’re facing a serious illness. This section helps you navigate the process, find reliable information, and make informed decisions in partnership with your healthcare team.

Patient Story – A compelling example of a patient improving their health outcome by researching their life-threatening illness and sharing findings with their doctor involves a woman diagnosed with advanced ovarian cancer. Upon receiving her diagnosis, she actively sought information about treatment options, including innovative therapies and clinical trials. Through her research, she discovered a trial for a targeted therapy that aligned with her preferences for less invasive treatment and potentially fewer side effects.

She presented this information to her oncologist, who initially was unaware of the specific trial but agreed to investigate further. After reviewing the trial’s eligibility criteria and potential benefits, the doctor supported her enrollment. The targeted therapy proved effective in controlling her cancer progression while maintaining a better quality of life compared to traditional chemotherapy.

This story highlights the importance of patients advocating for themselves, conducting thorough research, and collaborating with healthcare providers to explore personalized treatment options. It underscores how informed decision-making can lead to improved health outcomes and greater satisfaction with care.

There is More to Learn  

Most medical scientists agree that we currently know somewhere between 1% and 10% of all that is known about human biology and medicine. Thus, it is always possible that tomorrow may bring answers that we don’t have today. For example, one of the least understood areas of medicine is the impact of human feelings and emotions on the body’s natural ability to heal itself. Common sense and recent studies suggest that positive emotions, music, laughter, and human touch can have a positive impact on our health. The research also indicates that anger, helplessness, frustration, and isolation can contribute to poor health outcomes. However, there is very little research that confirms the outcomes noted above.

Partnering with Your Doctor

Your primary care physician should be your first point of contact. If you’ve recently been diagnosed and don’t have a follow-up appointment, contact their office to discuss your questions and concerns.

Ask Key Questions

During your appointment, ask about:

• The seriousness of your condition.
• The standard treatment options.
• What to expect during recovery.

Specialist Referrals

If your doctor recommends a specialist, remember that you have a choice. Research specialists to find the best fit for your needs. Consider factors like experience, expertise, and communication style. Contact your insurance provider to understand your coverage, including what is covered, the amount they will pay, and any required steps or pre-authorization procedures.

Expanding Your Research Beyond Your Doctor

While your doctor is a valuable resource, it’s essential to supplement their advice with your own research. Research is important because doctors may not be aware of every new treatment or clinical trial, treatment guidelines evolve as we learn more, and some practices may become outdated.

Where to Find Reliable Information

• Reputable Websites: Look for websites from reputable organizations, such as the National Institutes of Health (NIH), the Mayo Clinic, the Centers for Disease Control and Prevention (CDC), and disease-specific organizations (e.g., the American Cancer Society).
• Medical Libraries: Public libraries often offer computers with internet access and provide librarians who can assist with research.
• Academic Medical Centers: Explore the websites of leading academic medical centers for information on doctors, research, and clinical trials.
• Professional Medical Societies: Visit the websites of professional medical societies in your area.

Key Resources

• Healthfinder.gov: MyHealthfinder | odphp.health.gov      
• National Institutes of Health (NIH): https://www.nih.gov/
• Cleveland Clinic: Cleveland Clinic: Every Life Deserves World Class Care
• Mayo Clinic: https://www.mayoclinic.org/
• Centers for Disease Control and Prevention (CDC): https://www.cdc.gov/
• National Cancer Institute (NCI): https://www.cancer.gov/
• ClinicalTrials.gov (NIH): https://clinicaltrials.gov/
• The Health on the Net (HON) Foundation: https://www.hon.ch/en/
• National Guideline Clearinghouse™: (http://www.guideline.gov) A database of evidence-based clinical practice guidelines designed to help doctors and patients make decisions about appropriate health care for specific diseases or illnesses.
• MedlinePlus: (http://www.nlm.nih.gov/medlineplus/) Provides access to a vast collection of articles published in biomedical journals.
• National Center for Complementary and Integrative Health (NCCIH): (http://www.nlm.nih.gov/medlineplus/complementaryandalternativemedicine.html) Great website for consumers to find information about CAM research, treatment and clinical trials.

Evaluating Treatment Options

It’s important to understand the different categories of treatment. They include Conventional, Experimental, and Complementary approaches.

Conventional Medicine

Conventional Medicine is the standard form of care in the United States, often referred to as allopathic medicine, biomedicine, mainstream medicine, or Western medicine. It’s based on scientific research and widely accepted practices.

Experimental Treatments (Clinical Trials)

These offer access to promising new therapies before they are widely available. A clinical trial is a research study that evaluates the safety and effectiveness of new treatments, drugs, or medical procedures. Refer to the “Clinical Trials” guide at the end of this guide for more information on finding and accessing clinical trials.

Complementary and Alternative Medicine (CAM)

These therapies fall outside the realm of conventional medicine. Complementary medicine is used in addition to conventional treatments (e.g., aromatherapy to reduce post-surgical discomfort). Alternative Medicine is used in place of conventional treatments (e.g., a special diet to treat cancer instead of surgery).

Categories of CAM

• Whole Medical Systems: Traditional Chinese Medicine, Ayurveda, Naturopathic Medicine, and Homeopathic Medicine.
• Mind-Body Medicine: Meditation, yoga, art therapy, music therapy, and support groups.
• Biologically Based Therapies: Herbs, dietary supplements, and vitamins.
• Manipulative and Body-Based Methods: Chiropractic, massage therapy.
• Energy Therapies: Reiki, Qi gong, therapeutic touch, bio-electromagnetic therapy.
• Integrated Medicine: Combines conventional and CAM therapies to treat the whole person. For example, using meditation in conjunction with chemotherapy.

Evaluating Information on the Internet: The 3 D’s

The internet is a powerful tool, but it’s important to evaluate online health information carefully to weed out false claims and information:

• Dates: Check the publication date of the article or website. Ensure it’s current and includes the latest findings.
• Documentation: Look for credible sources, author credentials, and clear identification of advertising. The Health on the Net (HON) Foundation logo indicates adherence to ethical principles.
• Double-Check: Compare information across multiple reputable websites. Be skeptical of claims lacking supporting evidence. Always consult your doctor before following online advice.

Finding and Understanding Medical Research

• Look for Solid Science: Seek out high-quality clinical studies published in peer-reviewed journals. These studies are rigorously reviewed by independent experts. Be Cautious of animal studies, laboratory studies, or studies with small sample sizes. Their results may not be generalizable to humans.
• Consider the Body of Evidence: Sound health advice is typically based on multiple studies, not just one.
• Lack of Evidence Doesn’t Mean It Doesn’t Work: Especially with CAM therapies, a lack of research doesn’t necessarily indicate ineffectiveness. It simply means the outcomes haven’t been scientifically proven.

A Word of Caution About Misinformation

Be Wary of Unrealistic Claims: Be cautious of health providers making exaggerated claims of success or offering “miracle cures.” Trust Your Gut: If something sounds too good to be true, it probably is. It’s okay to choose a treatment, even if it’s unproven: Even if a treatment is considered a sham, you have the right to choose it if it’s legal.

Evaluating Website Trustworthiness & Quality

Use the guidelines below to evaluate which health-related websites you can trust. The most trustworthy sites will have most, if not all, of the following:

• The name of the person, company, or organization responsible for the site and its content should be easily accessible on the home page and most pages of the website.
• The author’s credentials, including their affiliation with any major medical institutions?
• The original source and “last revised” date of the information should be clearly labeled.
• The reviewers of the material? Is there a medical advisory board that reads the medical content before it is made available to the public?
• The purpose and goal of the sponsoring organization.
• Any source of a website’s income should be clearly and transparently disclosed. Does the site offer advertising or subscription services? Is it sponsored by another company?
• The site’s purpose should be easily accessible. Most websites have a link called “About Us”, or something like that, you can click on to learn the purpose of the site.
• Medical facts should include references to articles in medical journals, additional contact information, or links to the research on which the facts are based.
• Opinions, chat rooms, advice, and personal observations should be clearly distinguished and separated from scientific findings and research.
• Easy ways to contact the sponsor for more information and to verify information presented?
• If you must register, is it clear how your personal information will be used?
• Does the site have a clear privacy policy?

Connecting with Patient Communities

Connecting with others who share similar health experiences can provide valuable support and insights. Here are some resources for finding online patient communities:

• PatientsLikeMe  (http://www.patientslikeme.com ): This free platform enables patients to share their health data and connect with others who have similar conditions and treatment experiences.
• MDJunction: (http://www.MDJunction.com) Offers free, patient-driven online communities for various health conditions.
• DailyStrength: (http://www.dailystrength.org) Provides anonymous and free support groups organized by condition, along with an “Ask an Expert” guide.

Understanding Clinical Trials

Clinical trials are research studies that evaluate new medical treatments or interventions. They are conducted in phases to assess safety and effectiveness. Participation in a clinical trial can offer potential benefits but also involves risks.

Clinical Trial Phases

• Phase I: Evaluates the safety and dosage of a new treatment in a small group of individuals (20-80).
• Phase II: Evaluates effectiveness and further assesses safety in a larger group (100-300 participants).
• Phase III: Confirms effectiveness, monitors side effects, and compares the new treatment to standard treatments in a large group (1,000-3,000 participants).
• Phase IV: Gathers additional information on long-term risks, benefits, and optimal use after the treatment is approved.

Potential Benefits of Participating in a Clinical Trial:

• Access to cutting-edge treatments that are not yet widely available.
• Potential for more effective treatment or fewer side effects compared to existing options.
• Close monitoring and expert care.
• Opportunity to contribute to medical advancements.
• Possible coverage of treatment costs and other expenses (check trial details).
• Potential Risks of Participating in a Clinical Trial:
• Random assignment to treatment groups, which may include a placebo or standard treatment.

New treatments may not be effective, or they may have unexpected side effects. Health insurance may not cover all costs associated with a trial or treatment. Verify coverage before beginning any treatment and consider that more frequent testing and doctor visits may be required.

Finding Information About Clinical Trials

ClinicalTrials.gov: A comprehensive registry of clinical trials supported by the U.S. National Institutes of Health.

CenterWatch: Profiles clinical research centers and companies involved in clinical trials.

Cochrane Library: Provides systematic reviews of clinical trials to help patients make informed decisions.

Researching Your Condition

In addition to clinical trials, research is critical to making well-informed decisions. Here are some additional resources:

Using Your Research Effectively

Having access to health experts who can help you understand the information and then consulting with your doctor to determine how it applies to your specific circumstances and choices is important. Look for those experts by contacting your doctor(s) and your insurance provider. Ask both for a referral.

If you do not get the results you want from your doctor or insurance provider, you can research doctors by specialty on your own through your insurance provider’s website, through professional medical organizations, through leading healthcare websites, or by using Medline to find the key investigators of leading peer-reviewed journal research or the presenters at medical specialty meetings.

If you are not completely satisfied with the answers they provide, you might want to contact the following sources for additional help:

• Another doctor who is an expert in your illness or condition.
• A local chapter of a professional organization related to your illness or condition.
• A national organization that serves as either a professional, educational, or advocacy organization for your illness or condition.
• A patient advocacy organization.
• Online or local patient communities.

Local Chapters of professional organizations can be found through a simple Internet search that includes your illness, the word “organization,” and the city or area where you live. Examples of searches include “stroke organizations in Chicago” or “brain tumor organizations in Sacramento.”

Important Considerations

• Involve Your Healthcare Team: Discuss any research or potential treatments with your doctor and healthcare team before making a decision.
• Verify Information: Always verify the credibility and source of health information, especially when found online.
• Individualized Care: No single treatment is right for every patient. Consider your own individual characteristics, priorities, and preferences when making healthcare choices.

Remember, you are an active participant in your healthcare. By being informed, engaged, and working closely with your healthcare team, you can take an active role in managing your health and well-being. By working closely with your doctor, conducting thorough research, learning from other patients, and carefully evaluating your options, you can make informed decisions that are tailored to your needs.

Disclaimer: This information is intended for educational purposes only and should not be considered medical advice. Always consult with a qualified healthcare professional for diagnosis and treatment.