Kawaldip Sehmi: International patient advocates from 101 countries call for action

Plans to hold to the 9th biennial Global Patients Congress 2020 (GPC 2020) in the hallowed rooms of the Royal College of Surgeons in Edinburgh, to mark the International Association of Patients Organisations 21st anniversary were—like so many meetings this year—disrupted by the covid-19 pandemic. But the rescheduled virtual congress had a gravitas of its own and concluded with a strong call for action. 

The collapse of healthcare services round the world, the behaviour of some of the “agencies” enforcing quarantining, and high levels of patient harm during the covid-19 pandemic, undoubtedly warrant a strong response. We need a new agenda for change if we are to address the current threat to patient centred healthcare and patient safety globally.  

Day one of the congress saw over 1300 patient advocates participate online and listen to the views of expert patients, policy makers, and practitioners as they discussed the challenges and some of the success stories from the frontline of healthcare. This was then followed by a broad debate on a new road map for global health recovery post covid-19 and how to realise  WHO’s commitment to “build back better” and ensure implementation of the World Health Assembly Resolution WHA 73.1 covid-19 response

As the conference proceeded it was evident that every patient organisation had adverse experiences to report and stories of patient harm to share as a result of the unprecedented covid-19 health crisis. Mental health related patient organisations spoke out particularly strongly and many speakers underlined the rising crisis in the mental health and wellbeing of patients in most disease groups.

All healthcare services have been effected, from health promotion to prevention, treatment, rehabilitation, and palliative care. Patients who in most settings had previously mostly only endured small hotspots of problems and undertaken firefighting exercises in relation to specific issues such as access to medicine or patient safety concerns, now face a near complete domino collapse of usual services which are causing problems on a massive scale.

Patients with long term conditions and comorbidities have been alarmed by high covid related mortality rates and additional threats to health and wellbeing as a result of shielding and poorly resourced support programmes. Patients with rare diseases faced an additional problem of lack of information on how infection with covid-19 is likely to affect them.

On the positive side pre-meeting posts and virtual chats, as well as dialogue during the congress, made it clear that patient advocates and organisations want to play an active part in national and global efforts to control the pandemic and exchange  ideas on “Co-creation in Innovative Healthcare during covid-19 ” which was the theme of the meeting.

Key conference messages 

One loud message from GPC 2020 was that our health systems and healthcare teams do not know their patients as well as they had been telling us. Furthermore (and maybe worse still) many of the healthcare administrators and service delivery teams don’t know each other either, nor do they work together well, despite the digital and communications revolution. 

Healthcare teams have worked in silos across fragmented healthcare systems for so long that they have become isolated from the overarching aims and objectives of their health systems—and their patients. Faced with a system-wide and an all-encompassing health crisis they have to learn to talk with each other and work better together. One example where that has happened during the pandemic has been where healthcare managers have to identify and recruit nurses and health workers from across the system who have the skills in respiratory and acute healthcare, as healthcare systems have needed them to cope with patients acutely ill with covid-19. 

Expert patients have always been proactive, and many health systems rely upon them for change, renewal, and innovation.  So another key message from  GPC 2020 was that before health systems can start  ‘building back better’, they have to  ensure meaningful patient engagement and ensure true co-creation in  healthcare policy making,  service design and delivery becomes a reality. This in turn depends on cultural change among the policy elites.

Day 2 of the congress marked World Patient Safety Day. Dame Sally Davis, UK Envoy on Antimicrobial Resistance and Thomas B. Cueni, Director General of International Federation of Pharmaceutical Manufacturers (IFPMA), spoke about antimicrobial resistance as the second pandemic for which we have to be prepared and the launch of the AMR Action Fund

The benefits to patients of virtual conferences

Our 1300 delegates from 101 countries were able to join us without having to go through the usual frustrating challenges of  face to face meetings including having to obtain visas and travel insurance and cope with underlying conditions that some countries and insurance discriminate against. Many delegates were shielding, and could not have attended a face to face meeting. Others were pleased to avoid the hassle of negotiating airports, complying with security logistics, and coping with jet lag. The cherry on the cake, for some, especially those with diet and food related conditions, was that they could stick with home cooked meals and did not have to pay exorbitant venue prices for coffee. 

Take home messages and a call for action

Over the course of two days debate many issues were raised and important  messages sent out. These included the following:

  1. WHO Chief Scientist Soumya Swaminathan and the International Federation of Pharmaceutical Manufactures (a non-State Actor in Official Relationship with WHO) reassured patients that all WHO Member States and all of the pharmaceutical industry are cooperating and sharing knowledge and resources as never before.
  2. Strengthening health systems, especially primary health is a priority to lead the effort to vaccinate 8 billion people over a short time span. Patient engagement is vitally important here to address both the infodemic and vaccine hesitation, and help ensure vulnerable patients are vaccinated quickly 
  3. When effective vaccines come on stream regulators such as the FDA and EMA must maintain their strong stance on patient engagement and co-creation of guidelines and the African Medicines Agency should adopt the same approach  
  4. The World Health Organization’s Global Action on Patients Safety and the WHO Flagship Decade of Patient safety 20200-30 be integrated into all covid-19 control systems and the full spectrum of healthcare
  5. Patient engagement and co creation in health systems must be formalised by legal and policy means. 

In his closing keynote Joseph Kutzin, a health economist at WHO, highlighted how covid-19 has disrupted the journey towards universal health coverage. To get back on track, he said, we will need to find new ways to raise finance as income tax, VAT and duties, and corporation tax revenues are being severely affected by the economic downturns. And he urged greater investment in health literacy, health promotion, and prevention. Health is central to all policies, he underlined, and it was a lack of investment in global public goods like the International Health Regulation 2005 programmes which had, in his view precipitated this pandemic crisis. The meeting concluded with the launch of a call to action.

Kawaldip Sehmi, CEO International Alliance of Patient Organizations

Competing interests: None declared