How can patients have access to the latest science?

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Innovation in cancer research is happening at an accelerated rate, but the current healthcare system is not equipped to ensure patients can quickly access the latest science. There is a disconnect between treatment innovation and clinical practice.

Most cancer patients are seen at community hospitals and treated by generalist oncologists, and data shows that a physician would need to read 29 hours a working day to stay updated about new medical research.

How do we address this disconnect and facilitate truly patient-centric healthcare? Personalized cancer care navigation platform Outcomes4Me believes patient empowerment is a critical step: equip patients with the information they need to take a proactive approach to managing their own care.

At the most recent HLTH conference in Las Vegas, Outcomes4Me worked in collaboration with the HLTH Foundation, Boston Consulting Group (BCG), and Publicis Health to define and measure patient empowerment for the first time.

In Outcomes4Me’s inaugural State of Patient Empowerment Report, based upon a consumer survey of more than 1,800 breast cancer patients and data from over 1,100 medical institutions, the partner companies relied upon the comprehensive data set to explore the idea that patients are not fully informed of their options or in a position to influence all of their care decisions.

A shared understanding of the state of patient empowerment will help decision-makers across healthcare support patients’ ability to prioritize their own health goals. It will also expedite the connection points between pharmaceutical innovation and patient use and adherence to medication. Most importantly, it will ensure patients’ informed voices are heard.

The Outcomes4Me team spoke with Labiotech.eu about patient empowerment and why it is a concept the industry should be focused on.

What is patient empowerment and how does it differ from patient engagement?

Patient engagement does not account for patients’ desire to align their care with their own health goals or personal values. Measuring engagement alone does not consider patients’ wishes about their own life and care. Moving beyond engagement to empowerment prioritizes the patient’s own agency. To be truly empowered, patients must have: (1) easy, actionable access to medical records, (2) a trusted, multidisciplinary care team, (3) care based on the latest evidence-based standards, and (4) a healthcare experience that aligns with their personal life goals.

Q: How can you measure patient empowerment?

In the inaugural State of Patient Empowerment report, we measured:

  • How quickly and in what format patients could access their medical records (not just portal or visit reports data), as well as how new diagnostic data was delivered (e.g., did a patient learn of their cancer diagnosis first from a clinician, or from an automated message?)
  • Did clinicians share evidence-based information related to standards of care for a patient’s diagnosis during diagnosis, treatment, and recovery? 
  • Care team availability during pivotal points in early diagnosis, treatment, and recovery as well as ongoing availability, including discussions with patients about their own preferences.
  • Documentation and consideration of a patient’s own health and care goals and how those might affect their diagnosis, treatment, and recovery options.
  • Did the care team raise advance care planning and a healthcare proxy prior to a critical moment (e.g., broaching the topic immediately prior to a procedure could influence a patient’s ability to thoughtfully consider their wishes). 
  • Generally, do patients feel they have the information and knowledge they need to make decisions to meet their own health goals?

How empowered are patients in today’s healthcare system?

The study unveiled at HLTH revealed information gaps that can lead to poor health outcomes and heighten care disparities. Based upon the study results, breast cancer patients are unfortunately not fully informed of the evidence-based treatments that could influence their care. For example, study highlights referenced at launch include: 

Access to, and collaboration with, a trusted care team is not the reality for many patients

  • Only slightly more than half (55% of patients) felt their care team was accessible and/or that their oncologists really listened to them. 
  • 26% of patients reported not having a trusted relationship with their care team.
  • 1 in 4 patients learned first about their cancer diagnosis through an online portal rather than their care team.
  • 46% of patients did not feel fully comfortable engaging their care team to advocate for themselves.

Doctors do not systematically present patients with the latest, evidence-based treatment options and disparities exist across socioeconomics, ethnic backgrounds, and age

  • 37% of total respondents reported their doctor did not recommend genetic testing or genomic profiling at the time of diagnosis. 55% of patients with a household income of less than $75,000 were offered the opportunity, compared to 88% of patients with a household income of more than $150,000. 
  • Only 1 in 5 patients reported that their doctors presented them with a clinical trial as a treatment option. 18% of patients receiving treatment in a community hospital reported learning about clinical trials, compared to 31% receiving treatment in an academic setting. 17% of patients 66 and older said they were offered a clinical trial compared to 24% for patients under the age of 66.
  • Only 42% of patients reported being given a post-treatment care plan.

Patients’ preferences are not systematically discussed during the delivery of care

  • More than two-thirds of patients across the entire care continuum, from diagnosis to remission or no evidence of disease, have not had a discussion with their care team about advance care planning.
  • More than 40% of respondents reported not having a discussion with their doctor on how their treatment could affect their options regarding breast reconstruction, pain management, or lymphedema, and doctors did not share how treatment decisions could affect the ability to have children with 39% of surveyed women under the age of 51.   
  • 27% of patients feel they are not in control of their care decision-making.”

Why is it important to measure patient empowerment?

While innovation in oncology research is continuously accelerating, there is a chasm between the innovation that is occurring and the care that is reaching patients. For instance, genetic testing and clinical trial options are not consistently presented to breast cancer patients. In fact, according to the State of Patient Empowerment Report, 37% of patients said that their doctor did not recommend genetic testing or genomic profiling of their tumor at the time of their diagnosis. And, only 1 in 5 patients reported being offered a clinical trial as a potential treatment option. When 27% of patients report that they feel they are not in control of their care decision-making, the system must change.

How do we enact change?

There are no simple fixes, but we can take action to ensure patients receive the care they deserve. One immediately available solution is to work to educate patients that tools exist that make evidence-based guidance (e.g., personalized treatment options and relevant clinical trials) patient-facing. Innovation in digital health is working to fill the gaps–ensuring patients can access and understand the science-backed information that influences their own care, so they can make informed decisions alongside their care teams.

Explore other topics: Cancerdigital technologyUSA

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