by Julien Rashid, Intern

The health-care world is filled with talk about data; patient records, clinical trial data, and patient-reported outcomes are used increasingly across the sector.

From a biomedical research and development (R&D) perspective, data is the key to understanding what patients truly need and the roadmap to direct where our work needs to focus.

Data leads to knowledge, and that knowledge is what empowers the discovery of cures for real people who are suffering from real diseases and disorders for which there are no current treatments.

But if patients feel that their touchpoints within the R&D pipeline are undependable or conducted with one-sided intent, they will not volunteer the data that is so precious to medical advancement.

Simply put, there is little hope for the discovery of cures without patient trust.

Across the R&D process, patients need to trust that all stakeholders value their perspectives and are partners in developing safe and effective treatments.

Many organizations have efforts to encourage and understand trustworthiness from a patient perspective. For example, the National Patient-Centered Clinical Research Network has dedicated events and forums to discuss this concept.

Generally, patients and caregivers are unlikely to engage beyond their care with entities they don’t trust. FasterCures set out to better understand patients’ and caregivers’ current perceptions of different stakeholders in medical research as part of the Health Data Basics project. Through a survey of over 700 patients and caregivers, we learned more about individuals’ perspectives on health data and how much they trust others with it. The survey results below indicate the spectrum of trust across different organizations. 

According to the survey results, patients trust pharmaceutical companies/medical device manufacturers the least, with 42 percent claiming they do not trust them at all. Patients trust health-care providers the most, with 25 percent indicating they trust their health-care provider “a lot.” Only 3 percent do not trust their provider “at all.”

Patients moderately trust universities and hospitals. Approximately 80 percent of respondents are split between somewhat trusting and fairly trusting of both. Patients trust patient organizations and public health departments less, with many leaning towards “somewhat trust.”

While patients have at least some trust in most organizations, a plurality have no trust at all in insurance, pharmaceutical, or medical device companies. Two out of five patients do not trust pharmaceutical companies, and nearly half do not trust insurance companies. A scant 2 percent and 4 percent held “a lot” of trust in insurance companies and pharmaceutical companies, respectively.

What does trust have to do with data?

There is an evident pattern. In the survey, patients trust providers with whom they build relationships. The further the organization is removed from the patient, the lower the patient trust. Why? One likely cause is that patients don’t regularly interact with representatives from insurance companies, pharmaceutical companies, or public health departments, and most don’t belong to patient organizations. As a result, patients don’t have personal relationships with these organizations. To some patients, these organizations might feel less palpable, less human, and thus less trustworthy. Such a pattern parallels patterns of trust towards other large, “faceless” institutions. For example, Americans typically believe Congress, a “faceless” entity, is much more corrupt than their particular representatives.

Though patients mistrust insurance companies, these companies have access to big data and are well-equipped to improve individual-level health outcomes. Insurance companies have an incentive to keep their customers healthy and out of hospitals. With expansive access to behavioral and clinical health data, insurance companies are now trying to predict their customers’ health trajectories for more effective prevention. As data collection and analysis improve, these companies will use more insightful nudges. For example, a person with a sedentary lifestyle might be offered a reduced premium to join a gym. Insurance companies will need to improve patient trust to fulfill these initiatives and improve patient health.

Patients also distrust pharmaceutical and medical device companies, but these companies don’t have as much access to patients’ health data as insurance companies. Most identifiable health data that pharmaceutical and medical device companies have been collected directly from patients. Still, these companies have the potential to improve patient health through stronger trust.

Trust begins with transparency

It’s clear why greater trust is needed, but how can historically mistrusted organizations generate trust with patients and caregivers, and how can other organization move from a fair amount of trust to a lot? These organizations should increase data transparency and access for patients. Most patients are probably unaware of the depth of data these companies have. Giving patients insight and access to their data can help them improve their health, and with access to their data profiles, patients may even opt to change lifestyle or volunteer new data.

Patients are becoming increasingly independent, asking questions, joining patient organizations, and seeking to maximize their health care. This movement is reshaping health care into a more patient-centric system. This reshaping not only makes sense but is critical – patient data is precious. When the biomedical R&D system becomes untethered from patients’ lives, it loses focus on the very issues it exists to solve.  

Many companies are now beginning to realize that building trust through transparency and patient engagement is beneficial for everyone. If these companies can help patients leverage their health data, patients will lead healthier lives, and, in that scenario, everyone wins.