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 country:

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

Patients from all countries surveyed are more willing to share detailed information about the daily impact of their condition with patient organizations than they are pharma companies.

US patients were the most willing to share their data with patient organizations (64 percent) while patients in Germany were the least likely to share their data with pharma companies (38 percent).

Survey results show that patients are more willing to share detailed information about the daily impact of their condition with patient organizations (56% overall) than they are for pharmaceutical companies (49% overall).

Patients prefer to use services from patient organizations in all countries surveyed.

Don’t underestimate the emotional impact.

Over half (54 percent) of patients said they feel an emotional impact as a result of their condition every day. This rose to 72 percent in the United States. Are pharma companies accounting for this intensive emotional impact on a daily basis in the services they offer to patients?

Survey results show that over half (54% overall) of patients said they feel an emotional impact as a result of their condition every day. This rose to 72% in the US.

Patients feel patient organizations understand them better, ranking pharma the lowest in understanding amongst healthcare players in all countries.

Patients plan to engage with patient organizations more in the future.

Over half (54 percent) of patients globally said that they’re going to engage with patient organizations more in the future—compared with only 35 percent who say they’ll have more contact with pharma companies.

This gap is even greater in the United States, where 61 percent say they will increase their engagement with patient organizations versus just 27 percent saying they will do so with pharma companies.

Survey results show that patients are already engaging more with patient organizations than with pharmaceutical companies.

What does this mean for pharma?

There is a great opportunity for pharma companies to collaborate more closely with patient organizations. Doing so will enable an earlier and better understanding of patients’ individual needs, a more seamless patient experience and offers the possibility of creating an entirely new patient experience.

Keena Patel

​Managing Director​


Eva Wiedenhöft

Managing Director

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