Comment pouvez-vous partager les résultats de la recherche avec les patients pour les aider à prendre des décisions éclairées en matière de soins de santé ?

Yes. Everything starts with the patient. Even if you have the latest research findings, it starts with understanding one’s patients and respecting their preferences. For example, if there is new research that states giving a person blood transfusions at a hemoglobin level less that 7.5 g/dl might be beneficial. That might not matter to your patient if you developed a relationship with your patient and they mentioned that due to religious and spiritual reasons that they will never receive a blood transfusion. Healthcare is about building relationships and getting to know your patients. If you know there is a certain do not cross this line scenario (such as receiving blood due to personal reasons), you respect the patients concerns.

Teach them the medical jargon first........so that they can at least begin to understand their choices. We are launching CANCERWORDS ---for just this reason.

Working with a patient to better understand their treatment goals, how they want to receive treatment, and any limitations is a fantastic start. For example, if a patient does not wish to self-inject, providing alternatives or a clear explanation of why this is the best medication based on their circumstances is critical.

Nursing has used this approach since its inception. Understanding what motivates a person is important to their health and well-being. New technology standards like those being developed by HL7 FHIR, business requirements from ONC (USCDI+) and the expert opinions of informatics partnerships with NCI, NIH, FDA, CDC, CCMI, and others will inform and allow provider and patients to have same-time and real-time access to information in their systems to make better decisions. We are starting with Clinical Trial Matching and Research Consent. Watch for our work to be shared as it develops.

Though the manner in which you communicate/interact with your patient will differ from patient to patient based on their preferences (for instance some patients want to have more control and others exercise less deference) clinical justifications though be them dry at times are useful discussions with a patient in a good faith effort for full disclosure regarding their condition and evidence based recommended treatment

Avoid medical jargon. Assess your patient's current level of knowledge and understanding. Then, ask your patient how much information they want to know, and their permission for you to share the data.

I strongly believe it is time to assess health literacy as part of routine assessment, the so-called sixth vital sign, and part of it can include digital literacy. Low health literacy is directly related to our health, studies have found. When patients are assessed appropriately, then we know how to tailor the communication appropriately as well.

Como paciente experta y Chief Patient Officer, mi enfoque es garantizar que la información médica sea clara y accesible. Colaboro en la creación de contenidos para asegurarme de que reflejen las necesidades y expectativas de los pacientes. Que se utilice un lenguaje sencillo y ayudas visuales para facilitar la comprensión. Fomento la interacción y verifico la comprensión, promoviendo un diálogo bidireccional. Mi meta es que los pacientes no solo entendamos la información, sino que también nos sintamos empoderados y participativos en la atención médica.

Absolutely, conveying research findings to patients in an accessible manner is crucial. Using plain language, which encompasses simple words, short sentences, and an active voice, ensures clarity. It's important to steer clear of jargon, acronyms, and overly technical terms. When complex concepts are unavoidable, they should be thoroughly explained. Additionally, incorporating visual aids can significantly aid in making the information more digestible and engaging, facilitating a better understanding for the patient.

Think critically about presenting info. Don’t underestimate a patient’s ability to understand. Show them visuals, connect them to familiar concepts. Leaving gaps in the delivery of info encourages fear. Speak truthfully. Don’t blow sunshine.

In my experience, 1- the first step to build an efficient patient-physician relationship and help them make informed healthcare decisions is to "listen". After understanding the patient needs and concerns and answering their initial questions, 2- the pivotal aspect of preparing the patient for decision-making contribution is to teach them the main concept of modern medical practice, which "evidence-based" medical science. It is usually underestimated by clinicians that many patients don't know where the medical knowledge come from and how is it implemented. 3- the third and last step is to provide personalized and related information and support the patients decision.

This is easier said than done. It can be very complicated depending on the situations. Need to be aware of treatment cascade…something I had to experience in my caregiving journey was two options presented with equal weight and option 1 disappeared later on as option 2 chosen caused significant side effects that caused weight loss which made my dad disqualified for option 1,even though he wanted it out of desperation as his condition deteriorated. And this is why empathy is critical. Options have to be looked at with patients’ point of view at deeper level to guide them well,carefully and with kindness.You are not presenting the options.You are being right next to the patients in their perspectives as much as possible. Subtle but different.

This is so important yet sometimes difficult to do if we don't check ourselves for biases. Presenting balanced information entails outlining pros and cons objectively. Personalizing information involves aligning details with the patient's situation, values, and goals, fostering an understanding of potential impacts on their quality of life. Decision aids, like outcome-focused tools, aid in comparing options and clarifying patient values, enhancing shared decision-making for more informed choices.

Teach back is often the go-to method, asking patients to teach you back. Repetitions may be necessary and giving time for full understanding is important to remember. I often see clinicians think patients will understand what has been told the first time. Without checking and following up, it is not easy to know if the patient truly understood. Also, it is important to involve caregivers. It is not uncommon the caregiver will be doing the majority of the care. This is why I always tell people to have someone with them if possible. Patients are often overwhelmed, emotional, and anxious. There may be no room for understanding.

Addressing questions and ensuring understanding for diverse audiences involves employing clear communication strategies. Tailor language to be accessible, use culturally sensitive examples, offer visual aids, and encourage questions to clarify any confusion. Additionally, seek feedback to improve communication effectiveness. During initial assessments and follow-up visits, prioritize active listening to patients' concerns, assess their comprehension of information, and encourage them to express questions. Utilize diverse communication tools, such as visual aids and written materials, and consider involving interpreters or using translated materials for non-native speakers.

Encourage patients to ask questions and seek clarification. Engaging in two-way conversations about research findings helps patients feel included and empowers them to make decisions that align with their values and preferences.

Shared decision making is critical and I believe it needs to happen early on to build the relationship. When giving time for decision making, make sure there is a person who can explain, rather than sending that patient to a bot or a video program and assume an education was done. Context matters and it is better to build relationship with a person than an AI!

By providing written summaries or handouts with key points of the research findings, allows patients to review the information in their own time and can serve as a quick reference guide. It also helps them explain their decisions and discuss things more effectively with other family members.

Remember that your patients might rely on a family member for advice. Ask your patient if they want you to share the research data with a family member or a friend who will be involved in decision-making.

Work with patient organisations to gain insight into patient concerns. They will test concepts and provide feedback on current treatment options.

When it comes to any trials it is essential that when we are communicating with patients/members/families that we offer them A safe environment without judgment followed by 1.bite size details in their preferred language 2. Communicate support and assistance at every step 3. Speak to them and their family with respect 4. Support their choices and decisions 5. Earn their trusr

Here are things to consider when you discuss your research with patients: A. How does your research benefit patient care? B. What risks the patient will take if he/she participate? C. How does your research findings benefit others, an example would be the patient's relatives if the patient's condition is inherited?

Most people appreciate having an opportunity to consider what has been shared in their own space and in their own time. Try as we may, there is always an additional pressure associated with the consultation room. Following our conversation, I email my patients relevant links, articles and infographics. This often begets a different quality of conversation. The one where patient feels they can take the lead - because they have had time to do their reading and form their opinions and questions.