Patients and families confronting chronic, debilitating or life-threatening conditions at any age and any disease stage require reliable and affordable access to high quality therapies and supportive services throughout the care continuum in the settings that are best for them to optimize their outcomes and experiences. Yet today’s disease-centric care is fragmented across multiple specialists, subspecialists and settings, creating pressures to navigate pathways-driven treatments that overlook quality of life, functional outcomes, other personal priorities or individual characteristics that matter a great deal to patients and their families.
We know that patients rarely experience their symptoms as one isolated problem and can benefit from care that is truly person-centered and involves shared decision making. To accomplish this person-centered health care transformation, knowing precisely what is important to patients and families is paramount. Progress also requires dedicated commitment to enhancing clinical communication that is person-centered and goal-directed – learned skills that are essential drivers for delivering value-based care.
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Better health care value begins with improved communication about goals of care and personal values. Patients and families consistently report that they want to be involved in understanding their disease prognosis and treatment options and making decisions about their care. We chose to address these concerns as part of a grant funded project through targeted online survey efforts. Our primary goal was to examine multiple thematic areas from a broad patient perspective designed to explore the dimensions of what matters to patients.
The following highlights the preliminary analysis of some of the data collected from our virology cohort (HIV+ patients), specifically around the theme of communication. Survey participants were asked a series of 5 questions to gather information on how they wanted to receive health information, how involved they wanted to be in making healthcare related decisions, discussing what matters to them when selecting a treatment option, and their comfort level in broaching the conversation about quality of life with their doctor.
When asked, “how do you like to approach making decisions about your treatment” over 65% of the respondents wanted to make decisions in partnership with their medical versus the 14% who wanted to make their decisions alone or the 5% wanted the physician to make the choice for them. An additional 14% wanted their doctor to explain all of the options to them in detail before working together to make a treatment choice. The message from this data point is clear and supports our hypothesis that patients want dialog and information from their medical team and they want to be partners in making treatment choices.
In regards to doctor initiated conversations about things that are important to the patient in their care (non-clinical outcomes) 60% of respondents stated that their doctor did ask them about “what is important to you as part of making plans for your treatment”. Although this data point is encouraging, what was most compelling was that over 95% of those who answered in the affirmative, followed this question with a positive response to the question “did you feel that your doctor took that information into account when making recommendations”. So not only were the able to have the conversation – but their input was valued and used to identify and select a treatment option that was of value to them.
While only a small selection of the 100+ questions asked in the Patient Value Survey, the preliminary data gathered around patient-provider conversation in regards to treatment and care is encouraging. Historically, the HIV population have been the groundbreakers and drivers of action and having a voice in the way their chronic condition is treated. As we continue to use the collected data to drive a better understanding of what matters to patients, and how best to equip them for conversations about their comprehensive care and planning treatments that provide them the quality of life that they are seeking, we will continue to reach out to our non-profit partners to ensure that all voices are being heard.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.