“I want to convince you in the next few minutes that I am part of the solution, not necessarily just a problem,” Graham Prestwich, head of public and patient engagement, Yorkshire and Humber Academic Health Science Network, told delegates. of the HIMSS22 European Conference.
He represented the voice of patients during the session “From Patient Engagement to Patient Empowerment” where a panel of experts discussed how citizens could be more included in the digital transformation of health.
The speakers were: Dr. Kaveh Safevi, Senior Managing Director, Global Health Consulting, Accenture, USA; Begoña Nafria, Head of Patient Engagement in Research and Innovation Group, San Joan de Deu Children’s Hospital, Barcelona, Spain; Graham Prestwich, Head of Public and Patient Engagement, Yorkshire and Humber Academic Health Science Network, UK; Dr. Anne Snowdon, Director of Clinical Research, HIMSS Analytics, Canada.
“The current situation makes people feel like things are getting worse rather than better,” Prestwick added. “For people with disabilities, things are not going well and the chances of them being able to contribute to their own well-being seem to be receding, not progressing.”
When it comes to designing healthcare solutions, Prestwick said it was important to involve patients who represent the target audience and to ensure they were involved in creating a clear definition of the Problem to solve.
“A lot of people use patients rather than working with patients,” he concluded. “If I’m there, I feel like you’re doing things with me instead of me.”
Gain someone’s trust
Although telehealth exploded during the pandemic, adoption of other forms of digital tools plummeted after 2018, according to research conducted by Accenture in eight countries.
“As we watch citizen adoption of the technology over the years, starting in 2018, we find that the pace of adoption – which had progressed well and brought a lot of money and innovation – had in fact started to plateau,” explained Dr. Kaveh Safevi, Senior Managing Director, Global Health Consulting, Accenture.
Virtual health visits were the only exception to this, due to forced adoption during the pandemic when seeing doctors face-to-face was impossible.
“It was striking for us to see a uniform deceleration in the adoption of digital technologies, wearables and apps over the period,” Dr Safevi said.
Research has shown that this is partly due to a lack of patient confidence. Although healthcare providers have been ranked as the most trusted entities people can give their data to, trust in all stakeholders has declined since the pandemic.
“If they don’t trust, they are unwilling to engage with the system,” Dr Safevi continued. “You could argue that the pandemic has done nothing more to make people aware that their health data is available and could be used by others.”
To overcome this problem, Dr Safevi said it was important for innovators to consider more than the functionality and efficiency of digital tools.
“We see a lot of innovation around the value of the digital tool as measured by its primary purpose, which is engagement or effectiveness,” Dr. Safevi said. “But if we want our investments to be worthwhile, we need to include in our goal not just whether it works, but will anyone care?”
To restore public trust, he said it was necessary “to establish clear transparency around information associated with behavior that might be consistent with how you place yourself.”
Involve the younger generation
A remarkable example of patient empowerment comes from San Joan de Deu Children’s Hospital in Barcelona, Spain. Begoña Nafria, head of the patient engagement in research and innovation group, described an ongoing initiative to involve children and young people in decision-making at the hospital.
The youth advisory group, Kids Barcelona, was established in 2015 and currently has 20 members of which 80% are patients and 20% are from the local community. Every month, meetings are organized during which the members can give their opinion on the projects at the hospital.
“We are a patient-centered institution because we believe the only way for our health care services is to work with patients and their families,” Nafria said. “We include them in research and innovation because we want them to be partners.”
Children and young people are also involved in the co-design of medical devices, receive training on their data rights through games and are educated in the development of clinical trials.
“We have to completely change the mindset of solutions because we are so based on the fact that the experts are the doctors and the medical staff, and the children and their families are not on the same level,” Nafria said. . “We have to co-create and work with patients.”