This blog is based on content presented by Kathi Whitman, MA, Senior Medical Writer/Project Manager, Intermountain Healthcare, at the AMWA Medical Writing & Communication Conference and published in AMWA Journal v 31 n 4.
Making medical decisions can be challenging and frustrating. So many options and possible treatments exist, and doctors aren’t supposed to tell patients what to do.
One of the more direct applications of medical writing skills is helping patients to make informed choices about their health care.
The goal is to facilitate a respectful two‑way conversation between a health care provider and a patient.
One tool medical writers help create is called a decision aid. It’s a document that outlines the pros and cons of a potential treatment that patients can use to decide whether it’s right for them. When used thoughtfully, a decision aid can enhance knowledge and empower patients to make informed decisions about their health and lives.
Shared Decision Making (SDM)
The relationship between a health care provider and a patient is an important one. Both parties have much to offer. Health care providers bring medical expertise, while patients understand their own values, fears, and lifestyle realities.
Shared decision making (SDM) is just what it sounds like: a mutually beneficial relationship where patients and doctors work together to make choices about health care.
During the span of a lifetime, patients, families, and caregivers face many decisions, especially when weighing treatment options for serious illnesses and conditions. It’s never easy. However, shared decision making helps demystify choices by incorporating all the evidence available, including the provider’s clinical experience and the patient’s comfort levels, knowledge, financial situation, and support system.
Decision aids facilitate the conversation between the two parties.
Understanding Decision Aids
A good decision aid is written with health literacy principles in mind. It helps patients to clarify their values, fears, and questions.
No two patients are alike. But we are all experts on our own bodies and minds. So the goal of a decision aid is to present the clearest possible description of the options to prepare a patient to make a decision.
At a minimum, decision aids present the risks and benefits of treatment options, including the option of no treatment. A decision aid does not offer advice, and it is not supposed to steer a patient toward one particular option. Nor does it serve as a substitute for counseling or discussions with providers.
Evaluating Decision Aids
The Ottawa Hospital’s website collects existing decision aids. Hundreds are posted here with links to the developers. Most of them have extremely straightforward titles: “Heart Rate Problems: Should I Get a Pacemaker?” or “Low Back Pain: Should I Try Epidural Steroid Shots?”
The list of decision aids also includes ratings based on the International Patient Decision Aid Standards (IPDAS). This organization’s goal is to determine how effective a decision aid is in helping a patient make an unbiased decision. IPDAS also publishes a checklist for evaluating decision aids.
The Many Forms of Decision Aids
Historically, patients were handed a brochure. They could take it home and talk it over with their families to decide what worked for them. These days, decision aids might come in the form of an online questionnaire. Some decision aids are videos that include comments from people who have completed the treatment being discussed.
Some decision aids are embedded in an article. For example, this WebMD article on breast cancer treatment outlines options for all the stages of breast cancer.
What goes into creating an excellent and useful decision aid?
4 Steps to Creating an Effective Decision Aid
Listening to all the involved parties is key to creating a useful decision aid. The following is a 4‑step process that you can use to create one.
- Ask the patients. Previous patients who faced similar decisions are wonderful resources. This form of input can come from patient advisory councils, focus groups, surveys, or 1‑on‑1 interviews.
- Ask the providers. Doctors, nurses, home health workers, physical therapists, social workers, and other practitioners are all valuable resources for creating decision aids that work for patients.
- Create. Align the information in a way that is consistent with the situation. Is the patient considering assessment, diagnosis, or treatment? Make it user friendly by using visuals, worksheets, and quizzes rather than blocks of text. Be alert to inadvertent bias by keeping all the elements visually consistent and at the same length. Always keep in mind what the patient needs to know to make the decision.
- Evaluate and seek feedback. When you have a draft, get feedback from focus groups and surveys of patients and care providers. Use a checklist to make sure you are presenting the information in a clear and balanced form.
What Is Included in a Decision Aid?
The International Patient Decision Aid Standards Collaboration Criteria Checklist includes the following questions for creating the content of a decision aid.
- Information on the options with enough detail that a patient can use it to make a decision.
- Does the aid describe the health condition?
- Does it list all the options?
- Does it include the option of doing nothing?
- Probabilities of outcomes presented in an understandable and unbiased manner.
- Does the decision aid use event rates specifying the population and time period?
- Does it compare outcome probabilities using the same denominator?
When this content is developed using the process outlined above, the result is a decision aid that helps patients recognize the decision they need to make, understand their options, and move forward with confidence.
But…Do They Work?
The answer is yes, according to Research Advocacy Network (RAN), a nonprofit seeking to improve care for cancer patients. In their publication, Patient Decision Aids, RAN published a list of documented effects of patient decision aids. According to the results of several studies, decision aids
- Increase patient involvement and knowledge
- Improve patients’ abilities to clarify their values
- Have a positive effect on patient‑practitioner relationships
Patient advocates appreciate decision aids because they empower patients to get involved in understanding their options.
As a medical writer, you play an important role in creating effective decision aids that help people become fully informed and invested in their health care choices.