print-logo
Logo
  • Healthcare Consultants
  • Healthcare Managers
  • Who we are Arrow Down
    • About us
    • Our purpose & values
    • Our team
    • News & events
  • What we do Arrow Down
    • Overview
    • Market Access
    • Medical Affairs
    • Government Affairs
    • Commercial
    • Patient Advocacy
    • Lifecycle Management
  • Insights Arrow Down
    • Publications
    • Project cases
    • Early Asset Strategy
    • Value Pull-Through
    • Environment Transformation
  • Careers Arrow Down
    • Why join us
    • Open positions
    • Career paths
    • FAQ
  • Contact
  • Search Icon
  • Healthcare Consultants
  • Healthcare Managers
  • Search Icon
  • Search
Back to Publications
  • linkedin_icon
  • twitter_icon
  • mail_icon
  • print_icon
  • download

Involving Patient Associations EARLY ON really can make the difference

The pharmaceutical industry is engaging with patients more than ever before as companies realise the importance of the patient perspective for everything from clinical trial design to beyond-the-pill services. Patient engagement at a very early stage of drug development is now widely recommended and more commonly practiced. But what do patients think could be improved overall in the healthcare sector? We conducted a survey among patient associations around the world about the availability of needed drugs, the perceived knowledge and skill levels of doctors, and the behaviour and mindset of patients. In this report we reveal what they said.

We approached patient associations from all over the world. Most of the respondents come from Europe, closely followed by Africa, Australia and Singapore. The main disease areas they represent are cancer and diabetes, but also hemophilia, multiple sclerosis and rare diseases.

Patient associations can help shape the healthcare environment – to the benefit of all stakeholders involved.

We need to spread the word 

Almost all diseases benefit from early diagnosis and treatment. But of course, it is not as easy as that. Our survey suggests that people delay before contacting a doctor. Although seeing one ranks first in the list of contacts for patients with health issues, they are closely followed by searching for online information and talking to family members or friends.

In some countries, it can take years to be referred to the right specialist.

The reasons for not going to a doctor immediately are multiple and vary from country to country. Of course, the accessibility of healthcare services varies dramatically between countries. But lack of awareness is still a predominant cause for keeping patients away from a practice or clinic.

While there’s no question every disease area is fighting for the public’s attention, and some countries have better infrastructures for awareness and education than others, it suggests we need to focus heavily on raising awareness to drive diagnoses. Financial difficulties are ranked second, directly followed by the strain to find the right doctor to diagnose the condition. This particularly applies to rarer conditions, as it might take years to gain a correct diagnosis and ultimately being referred to the appropriate specialist.

Even when patients do see a healthcare professional, it does not always mean a quick diagnosis. In many countries, basic diagnostic equipment such as x-ray machines are scarce. But there is also a concern among many patients that primary care practitioners are not fully trained about their specific condition, or are able to refer quickly enough. 45% of respondents said that the reason for a delayed or sub-optimal diagnosis was limited medical knowledge of doctors, and 30% named the lack of experienced specialists.

The role of pharma brands and low prority of original drugs

When doctors decide on the best treatment option, they rely on their own experience, discussions with colleagues and medical guidelines and known best practices. 60% of our respondents think that doctors have no preference for branded, original drugs. This number goes up to 75% when it comes to the patients.

75% of the patients seem to have no preference for branded, original drugs.

Unfortunatley, the ability of doctors to communicate treatment choices and decisions to patients is rated ‘very low to average’ by 80% of the respondents. 

Therefore, even if a patient goes see a doctor, is referred to the right specialist and receives the appropriate treatment, they still may not follow the treatment plan correctly. Patient associations believe the main reason for this is inadequate communication from doctors to patients e.g. on treatment instructions or on side effect information. Other reasons that came up were financial difficulties and personal beliefs or attitudes of the patients.

Which changes are needed, and who can drive them?

The most urgent areas where changes are desperately needed according to patient associations are government healthcare funding (67% agreed this was the case), followed by healthcare infrastructure, for example a bigger number of doctors, hospitals and medical equipment (39%), the affordability of treatment (39%) and a higher availability of a broad selection of treatment options (22%).

Positive change is only possible if governments, healthcare providers and insurers, patient associations and pharma companies work closely together.

The most important groups to implement these changes are national governments and ministries of health, health insurance companies / national health services, patient associations themselves, hospital management and pharmaceutical companies. 

If the vicious circle of low coverage and no special funding by health insurance programs, especially for rare diseases, and therefore low availability of pharmaceutical products continues, significant change will not easily happen.

Involving patient accociations early on creates value

Patient associations can play an important role in promoting disease awareness and demonstrating the burden of a disease for patients and their families, who need to be better supported in their role.

They know what the unmet needs and expectations of patients are, and can help pharma companies to make informed medical research decisions and establish their priorities. They can even help pharmaceutical companies by co-developing patient services such as patient hotlines, support programs, etc. And if they are involved early enough, patient associations can also help in determining clinical outcomes that matter most to patients and designing patient-friendly clinical trials.

Pharma companies should involve patient organizations early on to establish their research priorities, design clinical trials in the best way and – in the end – save money and develop products that are really needed.

All of the above results in improved drug development which is more focussed, potentially costs less, and most importantly leads to drugs that actually have a market because they really serve an unmet patient need.

If you would like to discuss how to best engage with patients early on, simply get in touch!

Download PDF 963.5 KB

Contact our experts

Meike Wenzel

Meike Wenzel

Partner

mail_icon linkedin_icon

Related Publications

Publication Preview Image

May 29 2017

Power to the people

Publication Preview Image

May 29 2017

Nothing about us without us!

Publication Preview Image

March 21 2017

Engaging patients right from the start

Publication Preview Image

February 21 2017

How to ensure commercial success through early value definition

Publication Preview Image

February 20 2017

Early Value Definition: A paradigm shift

Publication Preview Image

October 11 2016

Achieving patient centricity: 4 key lessons from orphan disease companies

Share this page
  • linkedin_icon
  • twitter_icon
  • mail_icon
  • print_icon

We use cookies to ensure we give you the best experience on our website. Detailed information on the use of cookies, and how you can disable them, is provided in our Privacy Policy. By using this site or clicking on "OK", you consent to the use of cookies.

OK
arrow_up

How can we help?

Contact us

Our offices

Careers

Footer Logo
  • Who we are
  • What we do
  • Insights
  • Careers
  • Contact
  • Terms of use
  • Privacy policy
  • Imprint

2023 Executive Insight. All rights reserved.