Notes on Engineering Health, November 2019: A Question of Trust

While it is a bit of a truism to say that we live in a time of rapid change, that does not make the fact of it any less challenging. In particular, change at the intersection of technology, social norms, and economics is forcing us to grapple with the meaning and practice of trust in unexpected ways.

In the 1990s, pharmaceutical companies were routinely ranked as amongst the most admired entities in America—with Merck topping Fortune Magazine’s most admired list a record seven years in a row.

By 2018, according to the Edelman Trust Barometer, pharma companies had fallen firmly into the distrust category with only 38% of the survey indicating trust in the drug industry. Moreover, all five healthcare sectors in the survey (pharma, biotech, payers, hospitals and providers, and consumer health) saw their trust ratings fall, making health care the least trusted of the 15 industry sectors tracked by Edelman.

The erosion of trust in healthcare in the US over the past 30 years has multiple drivers including the high and rapidly rising cost of care, the high cost of pharmaceuticals, the growth of competing and often contradictory sources of healthcare information, and the rise of improperly disclosed conflicts of interest by physicians receiving compensation from pharma / medtech / biotech companies.

Edelman’s 2019 Trust Barometer continues to indicate a sector rife with trust issues. In their 2019 survey, Edelman found the largest global gap ever measured in trust in healthcare between the informed public and mass population:

"This inequality of trust underscores the instability of trust. It also may be reflective of the mass population continuing to feel left behind as compared to others, even as they recognize the advances that are being made that could benefit them. Given tone and tenor of the day, and particularly among mass population, healthcare may continue to see increasing demands for change and regulation."

The trust gap between women and men related to health care in the US was more than twice the global average with only 53% of US women indicating trust versus 69% of men as compared to 65% of women globally and 70% of men globally. Edelman notes:

"This trust gap has implications for all healthcare organizations, given that women often play the role of “Chief Medical Officer” for their families. Women are often regarded as the ones who take care of both older and younger family members, in turn managing multiple touchpoints within the healthcare sector. They are a critical audience for all health companies seeking to restore trust."

Lastly, although Edelman’s data shows that employees generally have higher levels of trust in their particular area of employment, healthcare, somewhat shockingly, lacks this employee trust advantage.  Trust levels in healthcare are nearly identical across healthcare employees and the general population:

"Where is healthcare falling behind? In a comparison of healthcare employees’ expectations of their employers with their perceived performance of their employers in several areas, the study shows the sector lags behind in employee empowerment and CEO leadership on key issues of the day."

If another possible truism is to be believed, “Change happens at the speed of trust.” We clearly have a long way to go to re-establish trust across the healthcare sector if we hope to effect positive change.

– Geoffrey W. Smith



Digitalis Commons
Digitalis Commons is a non-profit that partners with groups and individuals striving to address complex health problems by building solutions that are frontier-advancing, open-access, and scalable.

DiMe Society
Digitalis Commons has been an early and enthusiastic supporter of the Digital Medicine Society (DiMe), the professional society for the digital medicine community. We were impressed with them when we talked about DiMe in our note from August and their work continues to excite us. Among many other initiatives, here are a few items showcasing the breadth of DiMe activity and the quality of their work.

On Industry Standards and Definitions
Two pieces here and here help draw the distinction between digital health, digital medicine and digital therapeutics. The importance of differentiating between these three practices cannot be understated as trust in the tools by the patient population is crucial. What claims can be made? What uses for digital medicine tools are appropriate?

On Cyber Security
While digital medicine tools will undoubtedly have a positive impact on speed and quality of research as well as on outcomes for patients, they come with serious potential security risks for individuals. DiMe has been at the forefront of this issue by fostering interdisciplinary collaborations between computer scientists, medical professional and regulators. This effort was recognized at DEF CON where it won the Research Competition after pitching its vision for the future of digital medicine.

On The Production Of A Library Of Digital Endpoints
DiMe has released a crowdsourced but curated library of digital endpoints. Digital endpoints are assessed using data captured by a sensor, typically outside of the clinic during activities of daily living. They can aid clinical trials, and the pharmaceutical industry is making real progress incorporating these new endpoints into their current testing. These endpoints comprise critical and relevant information that was hard to measure in the past. The effort by DiMe in releasing such a database should help the entire industry speak a unified language when it comes to patient outcomes.

DiMe’s success has not gone unnoticed, and it was just announced as a finalist for the Goldman Sachs / Rock Health Top 50 in Digital Health under the category of Nonprofit of the Year. Please vote here.

– Jonathan Friedlander, PhD

Dart Grants
The Digitalis Commons offers quick, targeted $3,000 grants to individuals and groups working to develop public goods for better health. To learn more about Dart Grants, visit digitaliscommons.org/dart-grants.