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Funded by: NIH

Funding Years: 2016-2021

The development of Learning health systems is causing radical transformation of the environment within which the NCI pursues its Mission; understanding the Ethical and social implications of these changes is of paramount importance. In rapid Learning systems (RLS), routinely collected Patient data drive the process of discovery, which in turn becomes a natural outgrowth of clinical care. As the Institute of Medicine has noted, such systems have substantial promise for improving the quality of care and research, and ultimately the value of health care. As such systems develop, the blurring of the current distinction between clinical practice, quality of care, and research necessitates careful consideration of Ethical implications. As RLSs are in their infancy, it is critical to conduct research to generate informed and considered Patient perceptions of the ethical implementation of such systems, particularly regarding ways to ensure respect for Patient autonomy and privacy, including best approaches for informing participants and governance of data use, in order to realize the potential benefits of these systems. Therefore, we propose an innovative study that uses cutting edge methods of deliberative democracy to generate considered and informed opinions of cancer Patients, leveraging a unique opportunity to evaluate Patient experiences during the roll-out of a real-world RLS. Specifically, the American Society of Clinical Oncology (ASCO) has developed a real-world Oncology RLS known as CancerLinQ. CancerLinQ is being implemented in 15 vanguard practices over the next year, and the approach to Patient notification/consent and data governance in this System is actively evolving. We propose an empirical Investigation with two distinct approaches and aims, in collaboration with ASCO and its vanguard practices. First, we will use a deliberative democracy approach to determine the range of informed and considered individual and group opinions and recommendations of cancer Patients on the optimal approach for obtaining Consent and appropriate uses of information routinely collected in the course of medical care as part of a RLS that seeks to improve quality and advance research. Second, following CancerLinQ roll-out, we will survey Patients experiencing the real-world Implementation of this RLS in order to evaluate their knowledge and perceptions of that System. Conducting the proposed work in parallel with the development of a real-world RLS provides an opportunity to directly inform the development and Implementation of a national learning system that will ultimately impact tens of thousands of Patients, and it also allows for the consideration of real- life rather than purely hypothetical scenarios in ways that increase the likelihood that these investigations will yield insights that are directly applicable in other settings. the findings will have substantial relevance to the research Mission of the NCI, as Oncology Learning systems are fundamentally altering the context for research across the spectrum of cancer causation, diagnosis, Prevention, treatment, and survivorship care.

PI: Reshma Jagsi, MD. PhD. 

CO(s): Raymond De Vries, PhD. & Sarah Hawley, PhD. MPH.

Subjective Numeracy Scale

The Subjective Numeracy Scale (SNS) is a self-report measure of perceived ability to perform various mathematical tasks and preferences for the use of numerical versus prose information. The SNS has been validated against objective numeracy measures and found to predict comprehension of risk communications and ability to complete utility elicitations.

The 8-item scale contains no mathematics questions and has no correct or incorrect answers. Instead, it consists of 4 questions asking respondents to assess their numerical ability in different contexts and 4 questions asking them to state their preferences for the presentation of numerical and probabilistic information. The SNS is both reliable and highly correlated with the Lipkus, Samsa & Rimer (2001) numeracy measure, and it has been validated in both risk communication and utility elicitation domains.

For a PDF version of this document and the SNS instrument, click here: Subjective Numeracy Scale PDF.  

Please contact Angie Fagerlin for versions in Dutch, Japanese, Norwegian, Portuguese, and Spanish.

SNS Questions

For each of the following questions, please check the box that best reflects your answer:

  • How good are you at working with fractions? (Not at all good – Extremely good)
  • How good are you at working with percentages? (Not at all good – Extremely good)
  • How good are you at calculating a 15% tip? (Not at all good – Extremely good)
  • How good are you at figuring out how much a shirt will cost if it is 25% off? (Not at all good – Extremely good)
  • When reading the newspaper, how helpful do you find tables and graphs that are parts of a story? (Not at all helpful – Extremely helpful)
  • When people tell you the chance of something happening, do you prefer that they use words ("it rarely happens") or numbers ("there's a 1% chance")? (Always prefer words – Always prefer numbers)
  • When you hear a weather forecast, do you prefer predictions using percentages (e.g., “there will be a 20% chance of rain today”) or predictions using only words (e.g., “there is a small chance of rain today”)? (Always prefer percentages – Always prefer words)
  • How often do you find numerical information to be useful? (Never – Very often)

Scoring Instructions

All questions use 6-point Likert-type scales with endpoints as marked. Response values increase left to right (1-6). Scoring is based on these values, except Question 7 is reverse coded (6-1) for consistency.

  • SNS: Average rating across all 8 questions (w/ Q7 reverse coded)
  • SNS ability subscale: Average rating on Questions 1-4
  • SNS preference subscale: Average rating on Questions 5-8 (w/ Q7 reverse coded)

To cite the scale, please use the following reference:

Fagerlin, A., Zikmund-Fisher, B.J., Ubel, P.A., Jankovic, A., Derry, H.A., & Smith, D.M.  Measuring numeracy without a math test: Development of the Subjective Numeracy Scale (SNS). Medical Decision Making, 2007: 27: 672-680.

In any discussions about the validation of the scale, please use the following reference:

Zikmund-Fisher, B.J., Smith, D.M., Ubel, P.A., Fagerlin, A.  Validation of the subjective numeracy scale (SNS): Effects of low numeracy on comprehension of risk communications and utility elicitations. Medical Decision Making, 2007: 27: 663-671.

Tue, January 10, 2017

Jeffrey Kullgren was recently featured in the Michigan Medicine article, "What do health plan deductibles really mean for people with chronic illness? New study takes a look." Dr. Kullgren co-authored a JAMA Internal Medicine Research Letter, which reports that even “low” deductible plans can mean high out-of-pocket costs for many Americans.

CBSSM Seminar: Dina Hafez Griauzde, MD

Wed, January 18, 2017, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Dina Hafez Griauzde, MD
Robert Wood Johnson Foundation Clinical Scholar
VA Special Fellow, Ann Arbor Veterans’ Affairs Medical Center
Clinical Lecturer, Internal Medicine

Abstract: Greater purpose in life (measured using a validated scale)  is associated with lower rates of certain chronic conditions such as cardiovascular disease and stroke.  In this seminar, we will discuss the role of purpose in life in the development of prediabetes and type 2 diabetes as well as the potential to augment ongoing type 2 diabetes prevention efforts with strategies that promote greater purpose in life.

Raymond De Vries is involved in a new research study led by Akbar Waljee, MD, MSc, which will develop a risk-based strategy to help providers tailor timing of treatments among CHC Veterans to ensure that those who most need urgent therapy get it as quickly as possible.

Using democratic deliberation, Dr. De Vries will engage Veterans to learn their thoughts and preferences about such a strategy, which will help with its implementation in a clinical setting.

Click here for more details.

Mon, January 30, 2017

Brian Zikmund-Fisher's The Conversation piece on raw cookie dough was cited in the Popular Science Health article, "The Chemicals In Burnt Toast And Crispy Fries Won't Kill You, But The Calories Might."

Mon, January 30, 2017

Kayte Spector-Bagdady has a new commentary out in The Conversation about the law and ethics of research with human biospecimens. It focuses on the recently published revisions to the human subjects research regulations, highlights the debate that ensued from a draft version over its proposal to include nonidentified biospecimens in its definition of "human subject," and summarizes where the final rule landed and possible steps going forward.

Research Topics: 
Wed, February 01, 2017

Raymond De Vries' commentary, "Giving (Bits of) Your Self to Medicine" was recently published in Medicine at Michigan. He and his colleague, Tom Tomlinson (MSU), published national survey data in JAMA that showed that while most Americans are willing to donate to biobanks, they have serious concerns about how we ask for their consent and about how their donations may be used in future research.

CBSSM Seminar: Martina T. Caldwell, MD

Wed, February 22, 2017, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Martina T. Caldwell, MD
Robert Wood Johnson Foundation Clinical Scholar
VA Special Fellow, Ann Arbor Veterans’ Affairs Medical Center
Clinical Lecturer, Emergency Medicine

Title: Leveraging the Emergency Department for Women’s Reproductive Health Equity

Abstract: As a Robert Wood Johnson / VA Clinical Scholar at the University of Michigan, Dr. Caldwell’s research centers around community-based participatory research frameworks and mixed methodology to develop Emergency Department interventions to help eliminate health inequities in birth control access, uptake and continuation, as well as birth outcomes.

CBSSM Seminar: Tammy Chang, M.D., M.P.H., M.S.

Thu, March 09, 2017, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Tammy Chang, MD, MPH, MS
Assistant Professor, Family Medicine

"Tell us what you REALLY think: Challenges with understanding and engaging youth via technology"

Understanding and engaging youth is crucial to addressing nearly all health challenges today.  However, what are the most effective ways?  How can we use technology that is ubiquitous in their lives?  In this seminar, I will discuss our team’s work in addressing these challenges using text messaging and social media to understand and engage youth.

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