Research to Inform the Consumer Health Data Value Exchange

Research to Inform the Consumer Health Data Value Exchange


With the passage of the HITECH Act of 2009, and subsequent, well-intentioned regulatory and legal changes, there’s been an explosion in the availability of standardized personal health data across EHRs and various data aggregators. As a result, reams of health data now exist in a lot of places.

This growth in health data tracks with the creation, storage, and shareability of other consumer-generated data including digital behavioral data, social activity and health device data (like from fitness trackers).

And as data is more available, there is an opposing momentum to regulate that data.

We’re experiencing two equal and opposite forces, liberalizing the availability of health data and at the same time, tightening the strings around its use. As a result, health data is becoming, both, more and less available.

While there’s a lot of chatter across the government and in the industry about health data and how we can or cannot use it, we wanted to talk to consumers to find out, as the world around us has become more data-driven, where do consumers draw the line?  

As an industry, how should we behave?


When it comes to using data to tailor and target health information and advertising: do consumers think that’s a fair exchange of value?


Disdain for ‘Big Brother’

Targeted information is popular; surveillance and data storage is not

Consumers definitely have an appetite for getting targeted, relevant information about health-related products and services without having to go to the doctor.

of consumers say they want information about relevant products, medicines and treatments without having to see the doctor

But if the information or notifications they get were based on their search histories, they report being less favorable.

of consumers say it would be useful to receive notifications on the Web or in an app based based on their searches or clicks about health concerns

While consumers claim to not like the idea of behavioral targeting, they do recover when assured that their data isn’t being saved. This can be a key consideration for marketers as you look into ways to target condition-specific information and advertising. 

of consumers say it would be useful to receive notifications on the Web or in an app based based on their searches or clicks about health concerns IF it’s clear that no identifying information is being saved about them

In summary, people want value, and will share some personal information for that value, but there’s an intangible line out there that they won’t cross. 


Neutral Until Proven Otherwise

At least a quarter of people will accept ‘whatever,’ so long as their lives are fuller and easier

The Consumer Data – Health Information Tradeoff

An additional 1/4th of respondents are neutral


neither Agree nor Disagree

When asked about the usefulness of targeted information a) overall, b) based on searches and clicks, c) that may or may not be saved, about a quarter of respondents expressed no opinion: “neither agree nor disagree.” Perhaps they’re not really bothered by behavioral targeting but aren’t comfortable endorsing it. Or perhaps this is people saying “maybe”, or “it depends”: that as long as there is a real value exchange in how we innovate, we can be bold about it.


Beyond information, what kind of value justifies the sharing of health data?
We gave respondents a series of hypothetical situations and asked them if it made them more likely or less likely to support sharing their personal health data.


Acceptance for Explicit Value

Life and death situations justify data sharing

Two ‘no-brainer’ situations emerged. 

Drug Interaction Management: 79% said they are more likely to support a doctor being informed by a person’s EHR that the drug they are about to prescribe could have a dangerous interaction with another drug the patient is already taking but forgot to tell them about. 

Emergency Access to Health Profile:
75% said they would support access to their health data if they were brought to an ER unconscious and access to their medical records prevented the ER doc from making a dangerous decision. 


The use of health data to manage serious health issues like drug-interaction management and access to personal health information in an emergency

Strongly Agree



Fear of Losing Control

When it comes to new technologies, people’s guard is up

Two other scenarios were a bit more intrusive and spurred some reticence.

Use of Genetic Data: 62% supported getting a more complete diagnosis and treatment plan using genetic information gleaned from what had been understood to be a limited genetic test around a pregnancy. 

Artificial Intelligence:
Only 50% supported gathering and processing data from far-flung family histories to pinpoint potential health risks. 

'Doing the Math'

Emerging technologies, like the use of genetic data and AI are less popular; People still need to 'do the math.'

Strongly Agree


While people seem to understand that more and more personal data can drive better health interventions, they have their guard up around certain new techniques and technologies.


Finally, we explored how motivational incentives and discounts could justify increased sharing of personal health data.


Benefits on their own terms

People like money, but like it less than they dislike ‘chores’

Straight Discounts: About half of the respondents said they would be moved to share their data with their insurance company in order to get a meaningful discount.

Would share personal health data to get meaningful discounts from health insurance company

Discounts for Healthy Behaviors: Only 39% were willing to take on required behaviors based on data shared, even understanding that these behaviors would be intended to improve their health, in order to receive discounts.

Would share personal health data to get meaningful discounts from health insurance company


Given that respondents expressed some concerns around sharing their data across scenarios, we asked our respondents to rank the top three risks they saw in increased sharing of personal health data.


Service vs. Exploitation

People don’t want their data to fall into the ‘wrong’ hands. (Commercial counts.)

Following are the various risks people selected as their top three reasons for not wanting to share their data.

Top 3 risks to storing and sharing health data

% of times ranked a top 3 risk

rank 1

rank 2

rank 3

Risks most often ranked as a top 3 are:

Overall, people want to know that their data is protected and won’t fall into the wrong hands or be used against their interests in any way. There is a perception that the data might be used to discriminate, either in the provision of health insurance or employment. Security was another risk most often chosen as #1 of the three ranked. And there was a significant concern that the data would be used for commercial purposes.


Marketers, take note:


Data in this report comes from PulsePoint’s Consumer Perceptions survey, conducted in November 2020. These data represent a national sample of 1,264 respondents across age, income, gender and education bands in the U.S.

About PulsePoint

PulsePoint is a technology company using real time data to transform healthcare. Through machine learning and programmatic automation, we interpret the hard-to-read signals of the health journey to understand the connection points between relevance and engagement. 

We do this by unifying real-time Digital Determinants of Health™, offline and clinical data to create a unique and precise view of health audiences that refines, improves and increases its view over time. 


To learn more about how we can support your business with our programmatic marketing platform.

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