New research: Dutch patients and doctors surveyed in the study want attention for mental well-being, educational support and help for caregivers

Bristol Myers Squibb (BMS), a leading biopharmaceutical company, today published the Dutch results of an intensive listening exercise it conducted as part of its 'Because there is more to do' initiative. Patients, caregivers and health professionals reveal the greatest challenges they face when dealing with a disease, how they feel about pharmaceutical companies and where they think pharma could offer more support. The publication of the report is the starting point for further consultations with different actors from the healthcare sector, with new collaborations and relevant actions as a final goal. 

The BMS 'Because there is more to do' report, developed in collaboration with Ipsos, outlines the needs of patients, patient organisations, caregivers and doctors surveyed and where they think pharma companies can do more throughout the disease process to improve the patient experience.

Both doctors and patients surveyed in the study see a role for the pharmaceutical industry that goes beyond merely developing new medicines. 89% of the doctors surveyed agree or strongly agree that pharma should improve the quality of life of patients. 73% of patients agree or strongly agree that pharma companies should be strongly embedded in our society¹.

Below are some of the key findings from the report:

Pharmaceutical companies can do more for disease education

30% of patients and caregivers who responded to the study would like to see disease educational services better supported by pharma²; a percentage that is significantly higher than the European average (14%). 23% say understanding the condition is among the five most challenging stages³. 27% identified being consulted or empowered in treatment decisions as a top five area where they would have valued more support⁴. 23% of participating doctors would also like to offer more educational support to patients about their condition⁵; 15% of them selected insufficient disease information for patients as an unmet need that could be addressed in collaboration with pharma⁶.  

"Besides doctors, patient organisations also play an important role in informing patients about everything related to their illness and how to live with it," says Paul Lacante, Executive Medical Director at BMS Benelux. "Organisations in our exploratory research told us that they sometimes do not have the most up-to-date or complete information. They ask for support for more education about cancer and, more specifically, new treatments."

Pharma can make a difference in supporting caregivers

33% of patients and caregivers surveyed indicated that they would like the most access to support for caregivers.⁷ The percentage is remarkably higher than the European average (14%). 23% of the surveyed patients and caregivers⁸ in Belgium therefore selected that they would like to see support for carers better supported by pharma.  

A role for pharma in emotional and mental support

17% of the Dutch patients and caregivers who took part in the survey name coping with mental stress caused by the condition as one of their challenges⁹ versus 30% in the European report¹⁰, 27% of patients and caregivers surveyed would like more support to manage the emotional impact of the condition on the family¹¹. 40% of patients and caregivers surveyed would like to see emotional support for patients among the five services they would like to see better supported by pharma; 27% also would like to see more support from pharma for post-treatment services¹². 

"Although the patient organisations in our study do not see a direct role for pharma in the area of emotional and mental support, they are asking for support and partnerships in order to address, for example, help networks in a better way," continues Paul Lacante. "For example, 'buddy schemes' are mentioned as a way to provide better emotional support."   

New partnerships for pharma for more tools and efficiency

21% of physicians surveyed said that discussing treatment options with the patients is one of their top-5 most important challenges¹³. 27% of the patients and caregivers surveyed agree that good communication with their doctor is among the five most challenging stages of their condition¹⁴. 23% of the patients and caregivers surveyed would like more time in medical consultations¹⁵, but 44% of doctors surveyed said having sufficient time to provide adequate care to all the patients they have to manage is among their top-5 challenges¹⁶. Of those physicians who selected ‘insufficient physician time/capacity’ as an unmet need, 10% thinks the issue could be addressed in collaboration with pharma.¹⁷ Surveyed patients and caregivers (23%) point to 'health tech' companies as partners pharma should be cooperating more with¹⁸. 30% say that they would like to see online support groups with healthcare professionals better supported by pharma companies.¹⁹

"The insights from the 'Because there is more to do' report tell us where we as a pharmaceutical company can do more. As a next step, we are launching consultations with a multidisciplinary group of stakeholders in Belgium to dive deeper into the findings," concludes Paul Lacante. "These discussions will help us to shape new initiatives that offer relevant and concrete solutions for patients and their environment. We also hope that the 'Because there is more to do' initiative can trigger a broader sector debate about the needs in our healthcare system and how pharma innovation can go beyond discovering, developing, and delivering innovative medicines. Because there is always more to do."

As part of its consultation process, BMS is also organising a 'Because there is more to do' Summit on mental and emotional wellbeing through the patient journey at the European level. ‘Because there is more to do' is an international BMS initiative that brings together the views of patients and health professionals from eight countries. In addition to the Netherlands, these include Denmark, Finland, Belgium, Norway, Austria, Sweden and Switzerland. Help for mental and emotional health and well-being during the patient journey was a pronounced need among stakeholders in all these countries. So BMS are organising an open conference where further insights and best practices will be shared by patients and doctors from the eight countries. A multidisciplinary panel will discuss solutions and identify possible actions for the emotional and mental wellbeing of patients, their caregivers and loved ones.   

Technical note: 

Three surveys were conducted: 

• Online public survey in AT, BE, NL, DK, FI, NO, SE & CH via social media, paid ads on healthcare sites. 821 adults responded: predominantly patients, healthcare & pharma professionals.  
• Online study with 214 oncology or atrial fibrillation patients/caregivers of patients with those conditions in AT, BE, NL, DK, FI, NO, SE & CH. All countries weighted equally  
• Online study with 839 PCPs, cardiologists and oncologists in AT, BE, NL, DK, FI, NO, SE & CH. All specialties and countries weighted equally  

¹_{To what extent do you agree or disagree that pharmaceutical companies should do the following? [1=Strongly disagree, 2=Tend to disagree, 3=Neither agree nor disagree, 4=Tend to agree, 5=Strongly agree, Don’t know, Prefer not to say (Total patients/caregivers n= 30, physicians n=120)}

²_{Which, if any, of the following services would you like to see better supported by pharmaceutical companies? / Carer: Thinking of the person who you currently care for, which, if any, of the following services would you like to see better supported by pharmaceutical companies? [Select up to 5 from a list of 13] Base:30 (All Patients/caregivers)}

³_{Thinking of your experience with [CANCER/ATRIAL FIBRILLATION] which of the following stages, if any would you say was the most challenging for [PN: PATIENT INSERT you] [PN: CARER INSERT the person you care for]? Base=30 (All patients/caregivers)}

⁴_{At which of the following stages, if any, do you think [PN: PATIENT INSERT you] [PN: CARER INSERT the person you care for] would have appreciated more support? [select up to five from a list of 23] Base=30 (All patients/caregivers)}

⁵_{At which of the following stages, if any, would you like to be able to provide more support to your patients beyond the provision of medicines and surgery, but are unable to do so currently? [select up to five from a list of 28] Base: n=120 (All physicians)}

⁶_{Beyond medication, which if any, of these unmet needs do you think could be addressed in collaboration with the pharmaceutical industry to support your patients? Base: Physicians who think there are needs that can be addressed by pharma (n=117)}

⁷_{Which of the following services would you/the person you care for like access to? (pick max. 5 items out of 19) Base: Patients/caregivers (n=30)}

⁸_{Which, if any, of the following services would you like to see better supported by pharmaceutical companies? / Carer: Thinking of the person who you currently care for, which, if any, of the following services would you like to see better supported by pharmaceutical companies? Base:30 (All patients/caregivers)}

⁹_{Thinking of your experience with [CANCER/AF] which of the following stages, if any would you say was the most challenging for [PN: PATIENT INSERT you] [PN: CARER INSERT the person you care for]? Base=30 (All patients/caregivers)}

¹⁰_{Thinking of your experience with [CANCER/AF] which of the following stages, if any would you say was the most challenging for [PN: PATIENT INSERT you] [PN: CARER INSERT the person you care for]? Base=30 (All patients/caregivers)}

¹¹_{Statement ranking (23 statements) - which of the following stages, would you/the person you care for have appreciated more support?}

¹²_{Select item importance (pick max. 5 items out of 13) –Which, if any, of the following services would you like to see better supported by pharmaceutical companies? Base:30 (All Patients/caregivers)}

¹³_{Thinking about your experience of treating and managing your patients, which of the following stages would you say present the most challenges to you as a physician? [select up to five from a list of 28] Base: n=120 (All physicians)}

¹⁴_{Select item importance (pick max. 5 items out of 23) - which of the following stages, would you say were the most challenging for you/the person you care for with this condition?}

¹⁵ _{Which of the following services, if any, would you/the person you care for like access to? [select up to 5 from a list of 19] Base=30 (All patients/caregivers)}

¹⁶_{Thinking about your experience of treating and managing your patients, which of the following stages would you say present the most challenges to you as a physician? [select up to five from a list of 28] Base: n=120 (All physicians)}

¹⁷_{Beyond medication, which if any, of these unmet needs do you think could be addressed in collaboration with the pharmaceutical industry to support your patients? Base: Physicians who think there are needs that can be addressed by pharma (n=117)}

¹⁸ _{Which, if any, of the following people or groups do you think pharmaceutical companies should be cooperating with more? Base: Patients/caregivers (n=30)}

¹⁹_{Which, if any, of the following services would you like to see better supported by pharmaceutical companies? / Carer: Thinking of the person who you currently care for, which, if any, of the following services would you like to see better supported by pharmaceutical companies? Base:30 (All patients/caregivers)}