Research shows governments must make it easier for patient organisations to provide effective consultation on new devices and systems.
By Amie Larter and Dallas Bastian
Shortfalls in the consultation between patient advocates and government on healthcare tech funding must be improved, researchers from the University of Adelaide say.
Dr Jackie Street, senior lecturer in public health, says patient organisations are not being engaged effectively, which can mean technologies crucial to patients go unfunded or underfunded.
“New medical technologies offer additional treatment hopes to patients across all fields of health and medicine,” Street says. “But they also represent a major financial outlay either for the patient or the public purse, which is why such consultation processes are important for decision-making.”
Street says it’s increasingly important to have the patient’s view when making decisions on publicly funded medical technologies, particularly as patients are now “better informed and seen as partners in their own care”.
“There has been a change in how patients approach their healthcare – from passive recipients of services to active partners in their own disease management. This has produced a class of patients capable and motivated to engage in funding decisions that impact on their own treatment.”
Street and researchers from the university’s School of Population Health studied patient groups and committee members to ascertain why patients groups were or were not involved in the process.
Results, which have recently been published in Health Expectations, showed deficits in the way patient groups were consulted. Amongst the main barriers mentioned were a perceived lack of transparency, a lack of provided information and tight response deadlines.
PhD student Edilene Lopes says the lack of transparency causes patient groups not to understand fully how the process functions or how their contribution would be used.
“People don’t understand the language used in the policy documents, so it’s hard for them to answer and give their opinions,” Lopes says. “Another problem is that people don’t have enough time to answer the questions. Sometimes they receive the documents and have two weeks to answer, but they need to talk to other patients, they need to find out what the main issues are for different types of patients, and this takes time. Sometimes they don’t have this time.”
Street says whilst governments around the world struggle with this issue, changes will help ensure consultation processes are satisfactory.
Encouraging patient representatives on the advisory committee to engage proactively with patient organisations is a good place to start, she says.
“Representatives don’t go out and connect with [the patient organisations],” she explains. “They have to come in and identify for themselves that they are going to be involved.
“Perhaps patient representatives or other individuals in government should be funded to be much more active in the way they engage with organisations and to provide some training for those organisations to be involved in the process.”
Street says it should also be more clear what data needs to be provided and how it is to be used, so patient organisations know better what information will be useful for the committee.
In addition, she says, increasing the number of patient organisations approached for consultation, and including them at different stages of the decision-making process – especially earlier – would help improve participation.
“One of the other things people identified is governments are not engaging with a wide enough group of patient organisations,” Street says. “They tend to engage with the umbrella organisations, those organisations that represent a range of different patient diseases or disorders. They’re not engaging with those grassroots patient organisations that [cover] just one disease or disorder.
“I think it’s quite important that those patients feel represented properly. I think we need to change the way we engage with patient organisations to include those more grassroots organisations.Do you have an idea for a story?
Email [email protected]