Despite reservations about pharma and a preference for services from patient organisations over those from pharmaceutical companies, patients want both to work together with the aim of improving care and providing a more seamless patient experience, suggest the results of a survey* carried out by consultancy firm Accenture.
Some 4000 adults in the US and Europe (France, Germany, the UK) were asked their views on the role of patient groups in providing support, information and other services and whether better collaboration with pharma companies could improve the patient experience and care.
Respondents had one of three different conditions that have a major impact on daily life: migraine; rheumatoid arthritis; and chronic lymphocytic leukaemia.
The results revealed that patients, regardless of their country or their condition, highly value services from patient organisations and prefer them over those provided by pharmaceutical companies.
This held true not only for emotional support and access to community support groups, but also for information on treatments and clinical trials, which pharma companies traditionally provide.
Less than half (47%) of respondents felt that pharma companies understand their emotional, financial and other needs related to their condition. And patients rated pharma companies lower on this than healthcare professionals, pharmacies and insurers.
The biggest gap is in the US, where two-thirds of respondents (67%) said patient organisations understand their needs compared to just 48% who say the same for pharma.
Nevertheless, most patients (84%) believe that patient organisations should be working together with pharma companies to create a more seamless experience for them.
Patients said that to improve their experience, it is more important that patient organisations work together with pharma companies than with other healthcare players. Half (49%) said they would be willing to share more detailed information with pharma companies about the daily impact on their lives of their conditions if it helped get them better treatment.
“These findings makes sense, given the more targeted nature of new science which is more personalised and often more complex in its treatment approach — and that delivering real impact requires a deeper understanding of the patient,” said Eva Wiedenhöft, a managing director in Accenture’s Life Sciences practice.
Among the top benefits that patients believe would result from a better level of collaboration between patient groups and pharma companies are easier access to information on their condition and treatments (56%), easier access to treatment (56%) and more personalised care (54%).
“By increasing their association with patient organisations, pharma companies can get closer to patients and develop a much deeper understanding of them as people, not just as patients,” commented Keena Patel, a managing director in Accenture’s Life Sciences practice. This could potentially lead to entirely new services that could improve the standard of care, she added.
The report notes that in Europe there was no clear organisation or player in the healthcare system that stood out as owning the care experience, with patients there using healthcare providers, health insurers, patient organisations, pharmacies and pharma companies fairly evenly.
Most European respondents expressed frustration with the overall care experience and support they receive, the findings showed.
*Better Together: 2019 Patient Services Survey. A survey by Accenture, 7 August 2019.