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IEEPO 2021 Position Paper

Executive Summary

Humanising‌ ‌Healthcare:‌ ‌a‌ ‌call‌ ‌for‌ ‌ transformational‌ ‌change‌

This executive summary is available in the following languages: Simplified ChineseSpanish, Portuguese, German, French, Italian (click on a language to access the translated version). The full Position Paper was launched at the IEEPO 'Think Global, Act Local 'event in November 2021 and can be found here.

For the first time in living history, a pandemic has closed down the global economy and brought healthcare systems to their knees. Even before COVID-19, cracks were beginning to show. Originally designed for acute care, our healthcare systems were being crippled by the needs of an increasingly diverse, aging and growing population, and pressure for a transformative change in how we deliver healthcare had begun. Systemic challenges identified in the healthcare systems include:

  • Siloed health systems where different specialities, disciplines and stakeholder groups work in isolation from each other 
  • The evolving role of the patient community in shared decision making in healthcare 
  • The need for improved communication, specifically between patients and healthcare professionals as well as other stakeholders
  • The dominance of a ‘one size fits all’ versus a personalised care approach
  • The lack of digital access, literacy and tools, together with the absence of a systematic and trusted digital infrastructure for sharing information
  • Need for patient-led evidence and patient-relevant data
  • Legal/privacy concerns over patient data.

Rebuilding healthcare systems around the needs of patients and citizens alike need no longer be a dream. The explosion in technology and the use of social media present new opportunities to help us reimagine and rebuild. We need a compassionate and sustainable system, one that brings patients, healthcare professionals, and other ecosystem stakeholders closer together in more trusting and equal partnerships to deliver holistic care for better outcomes.

Humanising healthcare is key to re-building sustainable healthcare systems and improving personalised healthcare.

The core concept of the Position Paper and the work of IEEPO is the importance of “humanising healthcare”. Busch, Moretti, Travaini et al. (2019) acknowledge that the concept of ‘humanising’ is not yet well-defined or clear. They define ‘humanised care’ in opposition to the automated, impersonal, mechanical procedures in healthcare that tend to result from the growing deployment of and reliance on technology. 

Humanised healthcare is about working hand in hand with patients and all stakeholders to create a more personalised approach. However, digital illiteracy and the inaccessibility of digital solutions can undermine this process. An extensive report by The Lancet describes many of the challenges faced in the course of the digital transformation in healthcare with digital becoming a new determinant of health (Kickbusch, Piselli, Agrawal et al. 2021). 

The IEEPO Position Paper defines and examines these challenges and opportunities across five categories (listed below) and provides a roadmap for change that is validated by the international patient community.

  1. Putting people at the heart of healthcare
  2. Humanising health literacy
  3. Humanising digital healthcare to build capacity by harnessing the power of patient data
  4. Humanising healthcare to focus on prevention and cure with a new 50:50 model
  5. Prioritising diversity, equity and inclusion to humanise approaches to healthcare

The Position Paper is unashamedly ambitious, whilst also suggesting and providing practical, evidence-based ways to make personalised healthcare achievable, working with innovators, tech, healthcare professionals, the biopharma/pharma industry, regulators, schools, academia, and governments to transform healthcare ecosystems.

Supporting evidence, published here for the first time, has been drawn from the IEEPO survey which was carried out in August and September 2021. The survey received 304 responses from patient representatives across the following regions: Europe, US/Canada, Asia Pacific, Latin America and Middle East & Africa. Results were also complemented by extensive desk research and expert interviews, building on the outstanding work that has already been done in this field.

Our goal is action!

"Change won’t happen overnight but if we unite for change, we will be able to transform our healthcare systems, together"

IEEPO External Advisory Committee (EAC)

It’s imperative to work with all stakeholders across healthcare to advocate for a fundamental shift in the way we deliver healthcare that is built around the needs of people and their communities. Our calls to action are broad and all encompassing; we call upon governments to reconfigure and synchronise the delivery of primary and secondary care with a greater investment in prevention; schools and academia to partner with their local patient organisations to help build health literacy, the tech industry to continue to invest in information technology (IT) to bring patients and healthcare professionals together in more trusting and equal partnerships. Finally, we all need to take a more proactive role in understanding our individual health needs whilst we simultaneously call for change.

All chapters and topics in this Position Paper contain specific calls to action for different stakeholders in the healthcare system, these can be found at the end of each chapter. The IEEPO patient community will, together with its constituencies, work all over the world to translate these general calls to action into concrete and specific activities that respect the circumstances and cultural backgrounds of different settings.

We acknowledge, not all of the recommendations and calls to action in this Position Paper or in healthcare governance are easily applicable or feasible in resource-constrained settings. 

In order to share best practices for each area discussed in this Position Paper, at least one relevant case study for actions or initiatives that have successfully worked in the given area have been shared within each chapter. Simultaneously, IEEPO has also collected a library of posters (case studies) that are not included in the Position Paper. These provide additional examples and starting points for continued action and planning. We encourage everyone to share their case studies with IEEPO and the patient communities that we are in touch with.

Special thanks to IEEPO’s External Advisory Committee for their support and contribution in developing this work and to the IEEPO patient community for their participation in the survey that underpins our findings.