How can patients be empowered to understand their treatment options?

While some patients will have the knowledge, skills and resources to be able to empower themselves through seeking their own information, this will not be the case for all. Health professionals should ensure they are providing all the information the patient needs in a way that considers the patient's health literacy and preferred delivery format. This includes considering those who may normally be left out of treatment conversations (e.g. provision of 'Easy-Read' options for those with intellectual disabilities).

Patient activation is a patient’s belief that their own actions have a direct contribution to their health outcomes. Activation can be measured and improved upon, and a patient’s level of activation should help dictate the treatment plan. When faced with a serious illness and challenging treatment plan, patient outcomes are optimized when they believe they are playing an active role in their own treatment plan, balancing “compliance” with their own ability to self-advocate and develop a partnership with their care team. Care teams can optimize outcomes by assessing activation initially and adding appropriate supplemental support focused on education, motivation and goal setting. These approaches have been proven to increase activation.

Decades of a misdiagnosed rare disease was discovered because I became an advocate for myself and let my voice be heard. I was told by healthcare providers that it was all in my head. After trials of medications that didn't work, several surgeries and removal of organs...I finally found a physician who actually took 2 hours of her time with me to really listen to what was going on in my life. A blood test that a PCP could run discovered my rare disease and then the proper treatments changed my life and gave me a better quality of life. Unfortunately, not all states have the same regulations for healthcare and health insurance also varies from state to state. I have learned to speak up and teach others how to use their voice #makerarevisible

To empower patients to understand their treatment options, it's essential for the patient to shift their perspective to that of being the CEO of their health and health outcome. The healthcare(s) then become the patients' partner. This mindset allows patients to assess whether a particular provider aligns with their health goals. Taking ownership of their health outcome enables patients to ask the questions they need to ask to understand the information presented as well as their options. This proactive stance promotes a collaborative relationship, working towards shared health objectives. Embracing this perspective leads to personalized and effective treatment plans, ensuring decisions are aligned with individual needs and preferences.

It would be immensely valuable for patients (especially ones diagnosed with rare or chronic diseases) to seek support and motivation within the available patient community. Seek feedback for similar treatment or experience and be connected to people with similar pathway.

Patients/ caregivers/family members need to have a list of questions to bring to appointments. Do your research ahead of time so you know what other treatment options exist. You could also use ChatGPT to ask, "What questions should a patient with X condition ask their doctor?"

Shared decision making is key to empowering patients. I want my patients to understand their options and be part of the decision so they will feel ownership in their own health.

I've found speaking to patients in layman's terms and not the medical mumbo-jumbo makes it easier for them to understand what going on with their treatment and care. When I'm performing an cardiac exam on my patients, I break everything down in plain English to make sure they understand COMPLETELY what's happening. Sometime I have to administer contrast to see the heart, if they don't fully understand the importance of what I'm going to do to them and why, the may refuse.

Patients need to realize they can ask for a second opinion. Often patients are afraid of asking for a second opinion, as they don't want to jeopardize their relationship with their physician, or be seen as questioning his or her opinion of recommended treatment. Patients need to learn how to identify and seek out key opinion leaders for credible second opinions. One can google "thought leaders" in a specific disease area, or search journal articles to see who is publishing in a treatment area. Doing this was the difference between life and death for a family member.

Patients lead rich, multi-textured and nuanced, lives which extend far beyond a diagnosis. It's important to convey your lifestyle and favorite activities to your physician so that you can choose treatment and care that allows you to live your fullest life.

Yes, this is correct. Talk with Care Team is always going to be useful and encouraging to patient, however the challenge may be how often medical team is going to make themselves available for such talk. Often it would be good to have support system within family itself in addition to Care Team.

Specific to side effects, use a journal to track your own data. Note how often and for how long you experience the side effect. Scale the severity of it from 1-5. Note changes throughout the day. Add information about factors you feel may be contributing such as diet, sleep, stress. Finally, make a note about the impact it is having on your daily life. Then, have a conversation with your doctor and share these details. By being a curious scientist, you may be able to help your doctor identify what's contributing to your side effect and to understand what it is doing to your quality of life. Of course, severe side effects should always be reported right away to your doctor.

It's important for a patient and the patient's family to understand a treatment protocol. I was the one to uncover a protocol deviation in a loved one's cancer treatment. Be responsible for your own care. Understand expected side effects, record and report adverse events. Written logs, or notes in your phone can serve as valuable tools for ensuring your doctor can provide the best treatment possible. Also important to be honest and tell your physician if you are truly compliant with any medication dosing. They'd rather have you tell them you take something sporadically than raise a dose and assume it's not working based on lab values alone.

In “Playing With Bees” I share the perspective of patients and families who suffered harm from medical errors. I have a unique perspective because I too suffered a life altering injury due to errors during an Achilles tendon repair. A major concern by many is the FAILURE TO LISTEN. See http://FrederickSouthwick.com

It may seem counterintuitive, however, focusing on simple lifestyle changes (like Breathwork etc) that you can control and fully understand (obviously speaking with your medical team first), can be very empowering in a time when many aspects are out of your control.

Something that we cannot underestimate is generative artificial intelligence. That Chat GPT and other tools allow for highly tailored, efficient engagement for patients with mission aligned input.

Education and engagement! Or as I like to put it the three e’s of healthcare. All three are needed in no specific order. All three are needed in order to build up a patients empowerment in their healthcare journey.