Patients, Users & Beyond

Patients, Users & Beyond

The patient engagement enigma: a European view



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Engaging patients at every stage and collaborative networking are two ways to get Health Technology Assessments (HTAs) into health systems faster. But how best to do it? This was the question explored at a Public Health Conference, Towards Patient and Public Engagement in HTA held in Zaragoza (27-28 April) to celebrate the 10th anniversary of the Spanish Network of HTA agencies, as Jenny Sims reports.

public health conference

More than 100 delegates attending the CIBA Aragon Biomedical Research Centre were offered insights into HTA collaborative working in Spain, Europe and Canada – and some solutions to shared problems. Many examples were given of how patient involvement has helped both pharmaceutical products and medical devices get adopted more efficiently and safely by national health care systems. But there are many barriers and challenges still to face, a range of experts agreed.

Spain, which has a National Health Service, but is divided into 17 regions, has benefited from building a two-tier ‘consolidated, collaborative’ HTA system, one at regional level and the other at national level. Each region has its own HTA but there is also an overarching HTA of elected regional members. A voluntary system, it’s left to the autonomous regions to decide whether to implement national HTA recommendations or not.

Paloma Casado Durández, from the Spanish Ministry of Health, said the aim is to ensure consistency of quality and accessibility of products and services throughout the Spanish National Health Service (SNS).

A range of analytical tools and frameworks are being used to support SNS decision-making and different initiatives throughout the Spanish HTA networks are being shared. These include OSTEBA – the Basque Office for HTA, ISCIII – the Carlos III Institute of Health, and AETSA – the Andalusian HTA agency. But difficulties arise comparing the various tools and frameworks. Regulators at EU level face similar problems.

Cross co-operation needed

‘There are a lot of bodies working in this landscape trying to overcome problems, and there is costly overlap. It’s one of the reasons why cross co-operation is needed,’ said Iñaki Imaz-Iglesia, an executive board member of EUnetHTA – the body which provides technical and scientific HTA support. Launched in 1994, EUnetHTA plays an instrumental role in joint HTA actions. Currently, it’s working on Joint Action 3, involving 29 countries and 81 partners, being 60 per cent funded by the EU, and co-ordinated by ZIN, the Dutch National Health system. ‘It’s a big network with many partners. Luxembourg is the only gap,’ said Iñaki.

EUnetHA aims to speed up processes, disseminate information, ‘protect citizens against ineffective technologies’ and inform safe policies. ‘We recognise the autonomy of member states. The final decision is local, and we don’t provide advice on price and reimbursement,’ Iñaki adds. But EU funding for joint actions ends in 2020. The Commission wants a different, more permanent model. This is in development – and yet to be consulted on.

Patient engagement 

Meanwhile, there is Spanish, European, and even wider agreement that patient engagement in the design, development and delivery of healthcare products and devices adds value in a multiplicity of ways. But engaging them is another matter.

Conference speakers agreed on the following key points:

  • Patients must be involved in HTAs from the beginning and at every stage of the process.
  • Their input adds value – often in unexpected ways.
  • There are problems in engaging patients.
  • There aren’t enough educated, articulate patient advocates.
  • Patient advocates need education and training.
  • Attitudes of professionals need to change to see patients as colleagues.
  • Results should be evaluated to see how patient participation brings value.

‘There is much to do,’ admitted Isabel Amo from the Spanish Patients Forum (SPF), which represents 32 organisations, over 1,000 associations and ten million people.

Hungarian Támas Bereczky, patient representative for the European Patients’ Academy (EUPATI), proposed that patients should be educated and trained to understand and deal with regulatory as well as clinical issues – and also paid for their time and participation.

Bereczky, a patient advocate in the HIV/AIDs field for more than a decade, said payment was currently a ‘hot topic’ and a controversial one. But he pointed out that few people could afford to attend meetings and get involved in consultations over long periods of time – sometimes years – without some financial compensation.

He said the launch of EUPATI in 2012 – a public/private partnership of 33 consortium members, funded by the Innovative Medicines Initiative, had been ‘a game changer’ in empowering patients on medicines R&D. Today it has a permanent educational programme.

The Canadian experience

Dr Tammy Clifford, Chief Scientist and Vice President Canadian Agency for Drugs and Technologies (CADT), Canada, said engaging patients with regulators was not easy, it needed trust.

Canadian research had shown that patients had concerns about being completely frank, and were sometimes worried that if they didn’t speak glowingly in response to questions, it might lead to a loss of funding (for provision of the device or drugs).

‘Honest exchange is needed,’ she said, suggesting some countries might not be using codes of practice as much as they should, or weren’t as transparent as they could be. ‘We need to ensure at the highest level that the public understand how decisions are made. For example, how something was approved in the US but not in Europe,’ she stressed.

A systematic approach

‘Evidence alone doesn’t work,’ said Nicholas Brooke, founder of the not-for-profit organisation The Synergist – an ideas incubator, and Executive Director, Patient Focused Medicines Development (PFMD). He agrees that patients need trust and ‘a safe harbour’ to get involved.

Patient engagement is still in its infancy and existing approaches are fragmented, said Brooke. An efficient, measurable and reliable framework that involves patients as partners has yet to be developed, validated and applied. It’s the reason he set up PFMD in 2015, an independent multinational coalition.

‘Our goal is to bring together initiatives and best practices that integrate the voice of the patient throughout the lifecycle of medicines development – speeding up the creation and implementation of an effective, globally standardised framework.’

It’s a lofty ambition. And he’s calling on stakeholders across the spectrum of global healthcare to sign up, including patients, patients’ organisations and regulators to sign up. Some of the 100 Spanish conference delegates surely will…

About the author

Jenny Sims is a freelance writer and editor specialising in healthcare management and policy. Follow her at @Jenny__Sims.

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