The patient perspective is crucial to ensure that new medical innovations and health research breakthroughs are fit-for-purpose and address patient concerns properly. If health breakthroughs don’t adequately account for patient needs, then research efforts will not have the desired impact.
For instance, an app where elderly patients need to input health data may be useless if the patients cannot use it because the buttons are not big enough. Similarly, a medical treatment for children that requires them to sit still for long periods of time may not be realistic. Patients also have concerns that researchers might not consider – for instance, researchers may be focused on finding a cure whereas patients might be equally interested in alleviating symptoms or improving their quality of life.
In IHI and IMI projects, patient participation can take many forms. Patients are often involved in the development of new calls, helping to define the scope of new topics. For instance, several patient organisations such as the Breakthrough T1D (previously the Juvenile Diabetes Research Foundation ), Autism Speaks, the Children’s Tumor Foundation and more have joined projects as IMI2 associated partners or IHI contributing partners. This has allowed them to shape calls for proposals on various disease areas like diabetes, autism, neurodegenerative diseases and cancer, and invest their resources and expertise in the resulting projects.
Patients as active partners in research
Active patient advisory committees, which are part of many projects, co-design research and provide researchers with their perspectives. Various methods are deployed to collect patient input, including interviews, surveys, focus groups, group discussions and workshops. Patients are also sometimes part of the team evaluating project proposals, or may be involved in mid-term reviews of a particular project’s progress.
Ingrid Põldemaa, a lupus patient advocate from Estonia and member of the IHI patient pool, took part in the evaluation of project proposals after one of IHI’s calls.
“I really appreciated how everyone listened – I felt like an equal partner in the evaluation process. It was clear that the patient perspective was taken seriously and meaningfully integrated,” said Põldemaa.
This view was shared by Laure Chotel, a colorectal cancer patient advocate from France and member of the IHI patient pool, who was involved in the mid-term review of an ongoing IHI project.
“Being involved at the European level with IHI was quite meaningful for me, I wanted to discover how European projects work,” she said. “I could see that the output of the project would be innovative and useful for everybody.”
Although there were a lot of documents to read, she said that the presentation of the project during the consortium meeting was very interesting and brought the impact of the project home to her.
“It became possible for me to visualise what the tool could be,” she said.
A legacy of impact
Patients have been involved in our research projects since the first IMI programme started in 2008. Around 60% of all IMI1 and IMI2 projects have patient organisations either as partners in the consortium or represented in advisory boards or ethics advisory boards, or being consulted for topics of relevance.
Alzheimer’s Europe is a patient advocacy organisation providing a voice to people with dementia, and they have been involved in IHI and IMI projects since 2010.
“Involving patients in research is very valuable because we can bring the voice of people with lived experience to the different research projects. It can help researchers to understand what is important to patients and it can shape how research is conducted,” says Ana Diaz, public involvement lead at Alzheimer’s Europe.
In IHI and IMI projects, the focus is on bold collaborations driving meaningful transformations in health, and the patient perspective is an essential part of this process.
“We’ve seen how the outputs of IHI and IMI projects have translated into changes of clinical practice and made real-world impact. IHI and IMI have really committed to meaningfully involving patient organisations and allow us to bring society into science,” says Angela Bradshaw, Alzheimer Europe’s director of research.
Room to improve
Although the patient perspective was clearly integrated in the evaluation, there is still room for improvement, according to Põldemaa. She noted that some proposals addressed broad health areas but overlooked the specific needs of vulnerable groups.
"In many cases, there are also language and digital literacy barriers preventing patients from getting involved. As someone who speaks Estonian, for example, I find it challenging to access research opportunities or information in my native language, which can be a significant barrier to involvement.”
She called for applicants to IHI calls to place greater emphasis on collaborative research, ensuring that patients are treated as equal partners, not just participants.
“In some proposals, patients were mainly involved in testing the final outcomes, rather than being engaged from the start as co-designers or decision-makers in the research process. True involvement must go beyond consultation - it should be inclusive and integrated from the very beginning," she says.