How can patients be empowered to understand their treatment options?

Having the patient/family be part of the planning process helps to buy into and follow the plan. The team should explain to the patient the plan and how it will work and encourage questions (any questions) along the way. Follow-up to make sure the plan is working is key. Supporting the person with positive feedback is important.

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

Seek reliable information comment seems to assume that people can read and can understand what is in the "credible sources". People need to work together to get through the healthcare system and stop counting on healthcare providers to get it right 100% of the time

Patient advocates can be an amazing source of information, experience, and empathy. Many patient advocates serve as guides to patients enduring chronic disease because they have also suffered from the same illness. Often times patient advocates lead to a network of individuals that can further extend knowledge and resources and possibly lead to supportive relationships. Ultimately the patient, and the patient caregivers, are responsible for health related decisions. Yet, it is quite true that we get by with a little help from our friends.

Talk about your end of life values BEFORE you are in crisis and share your written and video taped instructions with your Medical Power of Attorney (MPOA). If you don't have someone you can trust to know your mind and speak / act on your behalf when you can't do so for yourself, then hire someone (like me) to be your MPOA who will ensure your wishes are regarded so that your agency and autonomy over your body and end of life journey are maintained. Sadly, those who don't plan are generally doomed to ride the medical industrial complex's conveyor belt with no off ramp and will have a prolonged and traumatic (for the individual and their loved ones) dying process with ruinous financial implications to boot.

I think many patients are embarrassed about their chronic disease, particularly men. The best is to seek a medical person you can trust and be prepared to listen to you. Discuss your disease and symptoms fully leaving nothing out and even how this affects you mentally so the medical person can get a holistic understanding of your situation and then clarify it with a diagnosis and how you can start thinking positively. This may not need Meds but maybe a healthier diet to moderate exercise.

While it is important that patients find support within a community of fellow patients, it is important to not compare themselves to others. Even with the same diagnosis, each patient's experience is unique. Be an advocate for yourself, and choose the treatments/life that is best for you personally, not just because that is what others are telling you to do.

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.

A take-charge patient isn't afraid to ask questions. And if faced with a provider who is dismissive the patient will push back and demand respect. There is no such thing as a stupid question, and all providers should be respectful, patient, and forthcoming, although this is not always the case. Second opinions are also crucial when you want more information and need to be certain that any proposed treatment plan is appropriate, safe, and the best possible choice.

Utimately, you are your own best healthcare professional. No matter how good others are at dealing with patients 'like you' they don't know your specific case. So seek information where ever you are able. Other patients, e.g. through patient organizations, second opinions at a different doctor or different hospital, find out who important researchers are and reach out to them. Are there existing decision aids that might apply to your situation? If so, use them, most of them will bring new perspective to your situation. Educate yourself, and educate yourself some more!

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?"

Asking questions is an important part of cultivating a deeper understanding. Some of the medical terminologies, concepts and treatments can be complex and difficult to understand. Allowing the opportunity for patients and their families to ask questions can help clear up misconceptions and misunderstandings and empower the patient to better understand their care. Questions posed by patients can also identify additional needs that the patient may require.

absolutely .. taking charge of your own health is the prime and analogy used to be CEO of your own health is the right way..thanks LeNAE Goolsby

Patients often don't know the questions to ask. It's a lot to try to process information received in a doctor appointment, let alone try to formulate an intelligent question. I suggest patients research conditions, treatments, lab values, clinical trials and alternative treatments prior to appointments and generate a list of questions to take to appointments. It would be great if physicians came up with a list of Frequently Asked Questions and support organizations for conditions.

My advice to patients is to document everything. Ask as many questions as possible, researching beforehand, so you're at least familiar with some common terms that may come up in your appointment. Previously I mentioned creating a healthcare binder for those with chronic illnesses and taking it to your appointments. Unfortunately, medical gaslighting and physician pride can be the largest obstacles, so make sure you have an advocate with you. If your provider is resistant to you coming in with questions or ignores facts (peer-reviewed research), advocate for yourself by finding a new provider. Don't settle for sub-par care.

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.

Learn from other patients. Find a local patient organization, get involved in it, if possible. Ask as many as you can find or have the energy to talk to. Their wisdom will always bring a different perspective. Use decision aids when they are available, by far most of them will add things to the knowledge you already have about your decision making process. Talk to healthcare professionals, to researchers, to industry people, to other patients and their loved ones. Learn from all the people you can find and don't be afraid to ask 'stupid' questions - there are no stupid questions in the end. We all have to learn from the very start at some point.

Second Medical Opinion may be good option. Asking other patients is often counter productive. Best is that person needs to be encouraged and made mentally strong.

The patient is not always the final say in a decision. There are times when alert and oriented patients still choose to follow the decision of 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.

Expressing your personal values, goals, and preferences is vitally important and a valued contribution to your healthcare team's understanding. Cultural and ethnic differences and practices are just a few examples of values that can greatly impact the trajectory of a care plan. Patients themselves have the best understanding of their own values and how it relates to healthcare needs and treatment options. One way to address this is to make it a consistent practice to ask patients and families "what are your ultimate goals for care?" and "what can we do to best make a treatment plan that fits these goals and also aligns with your personal values?"

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.

I am most impressed when a surgeon tells you their own personal limitations. Like when a procedure is so risky they tell you they don’t often have as good of an outcome as when a different procedure is performed.

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.

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.

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

Patient himself is always a key person in Care Team. Nobody else than person himself knows the body well. Important to have self monitoring system.

Patient outcomes have more to do with the patient than the care, intervention or even education offered by the treatment team. In my experience, the patient and their unhealthy habits and lifestyle contribute more to long term chronic health complications than any single act of the treatment team.

Patients have to be educated in their options. Whether we like the option or not, it’s their right to know and understand. They even need to know what they can say no to, but what the no means. There’s nothing wrong with a patient who has education. In fact it would keep healthcare from making fake promises of miracles when there’s no chance. Those are the ones I truly find atrocious. When a patient or family go through hoops and anguish for empty promises.

One way I’ve tried to help patients and friends is to get them to take control of their treatment. A patient is within their rights to disagree with the doctor’s plan of care if they have good reason to. They also have the right to ask for a different doctor if they find their concerns are not being validated. A patient and his family also need more than the normal 2-4 minutes face to face with their doctors. Also, their plans of care need to be more specific to their health than what I normally see on the quickly what everyone else has. We as nurses need to really care about their health and not just get the place of care filled out for the shift. Many are just a waste of key strokes!

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.

Providers and healthcare workers can position themselves as accountability partners and promote a sense of empowerment by building a trusting and collaborative relationship. By actively listening to a patients needs and maintaining transparent communication, this will foster a safe environment in their journey towards recovery and better health.

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.

Under the topic of monitor and review outcomes, the challenge is often down to insurance and what it will cover that governs the regimen a patient takes. The technology horizon is producing emerging monitoring tools that are not only coming to life as cost effective tools but closer and closer to becoming true personailzed approaches that will be more affordable and a patient centric means of monitoring their success in the approach taken for recovery and a healthy life forward.

Support is essential in knowing you’re not alone. Support groups can be a lifeline but if they are always focused on the negative side and you leave feeling no sense of empowerment but worse off when you first arrived, seek out other support groups.

Consider barriers to empowerment such as physical disability, healthcare access, and family advocacy support. Recently, my father was deemed a candidate for eye surgery. He is hard of hearing and asked me to be the point of contact with the healthcare practice. The surgery scheduler has not returned any of my three voicemails over the last two weeks. After I call the main office, an urgent message to the scheduler and still we have received no phone call. Left on his own, Dad would not follow up and would simply give up on having the surgery. A patient advocate, whether a professional or a family member can break through barriers between patients and the care they need and deserve.

In my experience, I have spent time with my patients finding out what they feel about their symptoms and lead them to where the discomfort or misunderstanding is. Empowering them to learn how to described their symptoms gives them the confidence to be active participants in their healthcare. Also, teaching patients to ask what, when, how, estimated timeframe, and why questions, improves communication with healthcare providers.

Add compassion, kindness and show empathy, which are all free in a patients perspective. My experience on the subject matter showed there is a deficiency, which means everything to anyone dealing with the unknown in healthcare.