I recently started a class for medical writers about how to create educational materials for patients. Such documents vary in format: they include handouts in doctors’ offices; prescription instructions; and information on websites like Healthline.
(A Side Note About Words: Unfortunately, I need to discuss my use of the word “patient.” Many people dislike that label. I use the word “patient” only to describe people who seek medical care, and thus put themselves into the role of a patient. I would not describe a person with a disability as a patient in any other context, or simply because their disability exists. Some researchers would call me a patient just because I have ADHD. Please don’t do that).
Anyway, during this class, I will choose a topic and create materials to explain it. I’m ecstatic!
Of course, my imagination ran wild. I generated a long list of questions patients might ask. Unfortunately, I’m also having difficulty choosing one for the assignment. This problem is completely on-brand (#TwiceExceptionalProblems #ADHDProblems).
The exercise made me reflect about what health information people need.
I’m writing not only for fun, but to keep people informed and thinking critically. Thus, I want to make sure I write about topics that matter to you.
So, here are some topics I’d love to cover. What do you think?
I don’t have the answers to many of these…yet. I expect to do a lot of research.
I’d honestly like to know what medical questions are on your mind.
Disclaimers: Please be aware that I’m in the United States, currently writing primarily for U.S. readers. Thus, some of what follows may not apply you. As I research other countries’ health care systems and write for a broader audience, my writing will apply more broadly. Also, I am not a medical professional, with all that that implies.
Medication and Psychiatry Questions
My Stimulant Medications for ADHD Aren’t Available. What Other Medication Options Do I Have?
Why Write This: Right now, shortages of several stimulant medications mean many people with ADHD can’t access their prescriptions. They need to understand what options they have while their preferred medication is unavailable.
My Stimulant Medications for ADHD Aren’t Available. What Non-Medication Options Do I Have?
Why Write This?: Same as above.
Ask Your Doctor About These Common Medication Interactions
Why Write This: The more medications a patient takes, the greater the likelihood some of these medications will interact. Interactions can either reduce the effectiveness of medications or cause side effects. Drug interactions are complicated, so doctors may not look up this information and communicate it effectively at every appointment. Patients need to know they can, and should, ask about interactions. They should also know which common interactions to avoid.
Is Your Food Making Your Medications Less Effective? How To Prevent Common Food-Medication Interactions
Why Write This: Certain common foods, such as grapefruit, reduce the effectiveness of medications. I know from experience that doctors rarely mention these, and it can take a long time to learn.
When Should I Worry About That Long List of Side Effects?
Why Write This: Have you ever shuddered or laughed at the long list of side effects in TV ads or prescription instructions? If so, the manufacturers or ad writers failed to communicate effectively. One of the biggest challenges in health communication is helping patients understand probability and risk. Doing so is a medical writer’s responsibility.
What Should I Ask My Doctors About Medication Risks?
Why Write This: Sometimes doctors forget to tell you the likely benefits and side effects of a medication they’re considering prescribing. Thus, patients must ask for this information. Patients need to know what to ask their doctors to explain.
What To Do If You Find A Medication Isn’t Helping You
Why Write This: To warn people not to abruptly stop taking a medication without consulting their doctors. Suddenly stopping can be harmful with antidepressants and other medications that build up slowly in the bloodstream.
Do You Feel Dehydrated All the Time? These Medications Might be Contributing
Why Write This: “Dry mouth” may sound trivial, but it feels maddeningly uncomfortable. Because serious dry mouth rarely occurs, doctors might not warn patients of this side effect. Thus, patients might not know what’s causing their discomfort.
Pros and Cons of Ketamine vs. Transcranial Magnetic Stimulation vs. Psilocybin for Treatment-Resistant Depression
Why Write This: Some patients have taken traditional antidepressants or mood stabilizers for years and received limited benefit. Several relatively recent treatments can help such patients. These are increasingly researched and available, but won’t be familiar to many patients. To work with their doctor to choose the right medication, patients need information about each treatment. They could also use visual and verbal support that clearly, directly compares the different treatment options.
What Ketamine Treatment Looks and Feels Like
Why Write This: Ketamines are an increasingly common treatment for treatment-resistant depression. It’s used off-label (which means it’s not officially approved by the FDA as a depression treatment, but doctors can and do use it for that purpose anyway). Patients should know what the treatment will be like and how long it will take. They should also know what they’re likely to feel during and after a ketamine dose. Patients have described the feeling as similar to a runner’s high from running a marathon, but compressed into a short time period and thus more intense.
What are the Risks of Ketamines?
Why Write This: Patients should always know the risks associated with their medication, and ketamine has significant risks. In much higher doses than psychiatrists use, ketamine is used to anesthetize people for surgery. Thus, a health care professional should be present while you receive the therapy, especially if you are getting an infusion. You also shouldn’t drive home after receiving ketamine treatment.
Should I Take Ketamines if I am Already Prone to Dissociating?
Why Write This: This is an important question for some people, and one unlikely to come to mind during a doctor’s appointment. Ketamine has a dissociative effect. (Apparently, dissociation isn’t always a bad thing!) Some people, due to trauma or poor interoception, are already prone to dissociate. They may need a lower dose. Ask your doctor about potential cumulative effects.
Which Way of Administering Ketamines is Best for Me?
Why Write This: Patients should know ketamines can be administered in various ways, including by mouth, nasal spray, and IV infusion —the more invasive, the stronger the effect. Patients should be prepared to consider the intensity of the effect, as well as cost and convenience. Can patients do the treatment at home? Does the patient fear needles?
How Good is the Evidence that Ketamines Work?
Why Write This: Ketamines have been used as an anesthetic for a long time. Their use as an antidepressant is more recent. As a generic appeared and costs fell, ketamine treatment became more accessible. Research is ongoing and expanding. Patients should know enough to decide if the evidence of benefit is strong enough to be worth the risks.
Mental Health and Therapy Questions
I’m In Individual Therapy and Still Feeling Bad—or Worse than Ever. Is Therapy Working?
Why Write This: Patients sometimes expect to feel better immediately, which may not be realistic. Also, the healing process can be unexpectedly painful. When people process painful emotions, they may temporarily feel worse after therapy, and mistakenly believe that therapy isn’t helping them.
How Long Does it Take to Tell if Individual Therapy is Helping My Depression/Anxiety?
Why Write This: It takes time to build a rapport with a therapist and make progress. But at some point, you need to decide whether this therapist and their current methods seem to be helping. Then, you can talk to the therapist and make a change, or even fire them. So, what’s the time window?
How Long Does it Take to Tell if Group Therapy is Helping My Depression/Anxiety?
Why Write This: Same as above.
What to Expect from a Process Group
Why Write This: Process groups, a type of support group, are highly open-ended and unstructured. I’ve observed people new to such groups often don’t know what to talk about, when to talk, how much to talk, and how to respond to what other people share. Patients considering joining a process group may feel more comfortable if they start out expecting open-ended discussion.
How to Get the Most from a Process Group
Why Write This: Process groups are open-ended and unstructured. Therapists don’t necessarily provide goals, or explicitly discuss the fact that different people are looking for different things. Patients need to know what to expect, how to participate, and how to tell if the process group is helping.
Alternatives to Alcoholics Anonymous
Why Write This: I’ll put this as neutrally and objectively as possible: Al-Anon is controversial. If you’re not Christian or otherwise religious, or you feel uncomfortable with a “group mentality,” you may not like Al-Anon. However, other support groups are less well-known. People need to know the full range of resources available.
Is There an Addict in Your Family? You Might Need Support, Too.
Why Write This: When one person in a family or relationship has an addiction, it affects everyone else. Certain negative interaction patterns are common. However, I’ve observed that loved ones may not realize they need support, too, and resources are available.
How to Tell if You Have Treatment-Resistant Depression
Why Write This: Sometimes, a patient functions a little better with medication but still feels depressed, anxious, or fatigued. Extensive tinkering with medications and dosages may not help much. Doctors/psychiatrists may react differently in this situation. Some view this as successful treatment, while others suggest the possibility that the patient has treatment-resistant depression. Patients who aren’t benefiting from medication as much as they hoped need information about what other options are available, so they can decide if their current treatment is “good enough,” and if not, what else to try.
What Transcranial Magnetic Stimulation (TMS) Treatment Looks and Feels Like
Why Write This: TMS still isn’t well known outside of mental health care and neuroscience research, where I first encountered the technology. Plus, the whole concept of a futuristic-looking device that changes your brain’s electromagnetic waves could be intimidating. So, patients need to know what to expect. Concrete, sensory information is important, as well as how to prepare and how long it will take. I learned from doing MRI studies that people should know that they’ll need to remove metal belts and jewelry; that they could feel claustrophobic inside the scanner; that they’ll hear loud noise continually; and that they’ll be alone in the room but able to communicate with techs next door. People need similar information about the process of going through TMS.
How Good is the Evidence that Transcranial Magnetic Stimulation (TMS) Works for Treatment-Resistant Depression?
Why Write This: Let’s be honest, before you let a device mess with your brain’s electromagnetic fields, you’ll want to know how likely it is to reduce your depression, and to what degree.
How Good is the Evidence that EMDR Helps People With PTSD?
Why Write This: People are being diagnosed ever more often with PTSD or complex PTSD, and EMDR is a common treatment. Patients might know someone who is doing EMDR therapy, or a health care provider might recommend it. IMO, the concept behind it — that reliving a traumatic event while [look up and describe the eye movement thing]—seems bizarre. That makes it especially important to be skeptical and find out how well it works, and how strong the research evidence is.
Other Health Questions
Why Do I Feel Tired All the Time?
Why Write This: I suspect this is one of the most common symptoms people experience, so it deserves an answer. Unfortunately, because pain is associated with so many ailments, it may take time, many tests, and multiple health care providers to discover the cause and treat the fatigue. Patients should understand the process, including the sequence of tests they’re likely to experience. For example, certain tests for common causes are likely to be done early, by a primary care doctor, such as Vitamin D tests and blood tests to rule out anemia. Other tests are not routinely part of the process, such as the tilt table test for Postural Orthostatic Tachycardia Syndrome (POTS), but patients can seek them out. A step by step illustrated guide will help patients navigate the process—which can be especially exhausting when you’re already fatigued.
Navigating the Medical System and Self-Advocacy (Mainly for U.S. Readers)
How to Choose a Primary Care Doctor
Why Write This: Sometimes, you move or change health insurance plans, so you need to choose a new primary care doctor. Often, you can choose from several on your insurance network. However, information about them can be hard to find. If patients don’t feel confident in their choice, they may put off the decision. Giving them information could help them take action so they can receive care sooner.
How To Describe Your Pain to a Doctor
Why Write This: People with chronic illness often describe times providers underestimated and undertreated their pain. Patients also say they have difficulty using pain scales. Doctor-patient communication about pain can be difficult. Patients need to know what doctors are looking for, what questions they’ll ask and vocabulary they’ll use, how to use a pain scale, and ultimately, how to convey the severity of their pain in a way doctors can understand.
I Feel Sick. When Should I Go to the Doctor and When Should I Stay Home?
Why Write This: Some people go to the doctor at the slightest sign of illness, while others ignore their symptoms until they end up in the hospital. The former are viewed as hypochondriacs, while the latter can make themselves and others sick. On the one hand, doctors complain about overcrowded emergency rooms. On the other hand, the cost of medical care in the US would be greatly reduced if patients received more preventative care and never required emergency treatment. All this evidence suggests patients need a way to judge when to seek care based on more than their own personal risk tolerance or folk wisdom.
What Should I Do When Different Doctors Give Me Conflicting Advice About my Chronic Illness?
Why Write This: When a person has chronic illnesses, they see primary care doctors and at least one specialist. It’s nearly inevitable that at some point, they’ll give conflicting advice. Some trivial examples: If you have migraines, does caffeine help or hurt? Second, does that morning coffee dehydrate you because of the caffeine, hydrate you because it’s a liquid containing water; or have no effect because the positive and negative effects cancel each other out? When advice conflicts, patients need to know what to do next. Should they ask their disagreeing doctors more questions? Seek a third opinion? Patients should also realize they’re probably relying on the doctor’s affect, tone, and body language. For example, patients might interpret greater negativity and urgency in a doctor’s affect as meaning a symptom or test result is severe. Unfortunately, doctors’ nonverbal cues may not be deliberate, and do not necessarily accurately reflect the doctor’s actual meaning. Understanding that becomes especially important when different doctors’ nonverbal cues convey conflicting messages. Ultimately, how should patients weigh the evidence and decide what to do? A step by step guide with a flowchart might help.
How to Work with Your Psychiatrist to Choose the Best Medication for You: How the Decision-Making Process Should Work, and What to Do if it Doesn’t Go That Way (Real title will be shorter).
Why Write This: A psychiatrist should listen to how you’re feeling as well as measure it. They should present the medications available and describe their pro’s and cons. They should also incorporate the patient’s priorities into the decision. For example, different patients are willing to tolerate different side effects. A professor or truck driver might want to avoid sleepiness, and might be willing to put up with, say, dry mouth or reduced appetite instead. An underweight person might not want to risk having a reduced appetite and might be willing to tolerate drowsiness. From appointment to appointment, tinkering might occur, with the psychiatrist changing medications or dosages to get the right balance for you. The psychiatrist should explain any changes and tell you in detail how to stop or start medications. In reality, psychiatrists don’t always keep patients so informed or involve them so much in decision making. So, patients need to know they should be prepared to ask questions.
What to Do When Your Doctor Won’t Listen to You
Why Write This: If you’ve met a person with a chronic illness, especially if they belong to a minority group, you’ve heard a story of a health care provider dismissing, disbelieving, or refusing to provide care for pain or fatigue. In a better world, patients wouldn’t have this experience, but in reality, patients need to know how to knock on more doors until they receive better care — and know that self-advocacy is OK.
Ways to Spend Less on Your Prescriptions
Why Write This: In the US, using resources like GoodRx and coupons from drug manufacturers can save patients hundreds of dollars. Although patients are learning about these resources, not everyone knows yet.
It’s OK to Fire Your Therapist
Why Write This: Research and experience agree that rapport and trust between patient and therapist is part of what makes therapy work. However, patients don’t always connect with the first therapist they try. They may not realize that they can leave and find another.]
When Should I Fire My Therapist?
Why Write This: It takes time to build a relationship with your therapist and for your therapist to get to know you. So, when can you tell whether it’s going to work?
That’s a lot of questions. If you’re still reading, kudos!
If you spot any factual errors, please let me know and I’ll correct them.