RESEARCH REPORT

In brief

In brief

  • Accenture surveyed 4,000 patients from the United States, United Kingdom, Germany and France to understand the role of patient advocacy groups in providing services.
  • Surveyed patients had one of three specific conditions: migraine, rheumatoid arthritis or chronic lymphocytic leukemia (CLL).
  • We also examined ways to improve patient care through better collaboration.


We surveyed 4,000 patients across four countries with one of three specific conditions in order to better understand how patients use, engage with and value services from patient organizations in comparison to those from pharma companies and other healthcare players. The results lead to three key findings:

  1. Patients prefer to use services from patient organizations in all countries surveyed.
  2. Patients feel patient organizations understand them better and rank pharma the lowest in understanding them amongst healthcare players in all countries.
  3. Patient organizations are winning in patient engagement across all four countries surveyed.

Here is where we found some unique differences by condition:

Patients are willing to share their data to get better care.

In general, patients are more willing to share detailed information about the daily impact of their condition with patient organizations (56 percent) than they are pharma (49 percent).

Migraine patients were most willing to share information about the impact of their condition with pharma companies (53 percent) but CLL patients were the least willing (44 percent).

Satisfaction is high across the board for services from patient organizations.

Of all patients surveyed, 61 percent are completely or very satisfied with the services they receive from patient organizations.

67%

of CLL patients are satisfied overall with the level of support they get to manage their condition across all organizations they engage with.

ONLY57%

of migraine patients are satisfied with the level of emotional, financial, and other daily support they get to manage their condition.

Patients say that pharma doesn’t understand their needs.

Less than half of patients (47 percent) said pharma companies understood their emotional, financial and other needs related to their condition—ranking the lowest across all three disease states (49 percent in migraine, 47 percent in arthritis, and 44 percent in CLL).

Survey results show patients believe patient organizations understand their emotional, financial and other needs better than pharmaceutical companies.

The new facetime.

While patients are engaging the most with patient organizations by digital means (online + email), 72 percent of CLL patients are attending events hosted by patient organizations and calling to talk to a representative over 80 percent of the time.

Survey results show calling to talk to a representative is a popular engagement preference along with attending events in-person.

What will the future be for pharmaceutical companies?

Pharma companies must innovate and collaborate with patient organizations to better understand patients’ individual needs. This will allow them to create a seamless experience for patients and enable delivery of better services, helping patients recover in new ways.

Keena Patel

​Managing Director​


Eva Wiedenhöft

Managing Director

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