Birgit Bauer is Digital Health and Social Media Expert, Journalist and Speaker, also analyst. She is specialized in communication in healthcare. In her second life, she lives with Multiple Sclerosis. Birgit is an influential Blogger about MS and Patient Expert and involved in different Projects across Europe. She gives talks and keynotes about patient centricity and the needs patients from different disease areas have, also she gives workshops about communication with patients and how to cooperate with them.
Over the years, we discussed a lot about patient centric. At congresses, events it was a big theme. From time to time it looked like to work with patients is more a trend than necessary and sometimes it felt like others started to study patients. Observe them. There were a lot of questions, interviews and surveys, lots of actions like ad boards with patients.
In the past sometimes I felt like a study subject. I was asked so many questions which must have been cleared already at this time. New ideas, frame works came up. The question for me was: do we have a new framework which would bring patients into the center or do we still talk about? Are lessons on patient and industry side learned? Of course, I noticed that there was a shift going on. The different stakeholders have mostly learned, that “Patient centricity” is not a flowery phase. It is real and must be realized because of the expectation and needs of patients. And we have not reached it already.
In the center of … or the patient expert
During the last years the role of patients has changed. From a silent consumer to an active, informed and empowered person who wants to be involved in things around their own healthcare. Patients raise claim in information, transparency and details. In all aspects of healthcare. Patients must be centered. Their needs must be noticed by all stakeholders to be able to provide the best and personalized healthcare.
Patients have started to make their own decisions. Doctors become a consultant, an important partner in the decision-making process. Not everyone likes this, we know that, but the change has started and can’t be stopped. People are more conscious in decision making, health literacy and digital literacy grow. Especially, when people live with a chronic disease. When they become a patient. This means a complete change of life. Therefore clear, transparent and an early involvement of patients in healthcare is needed.
Not just when patients see the doctor, it is in all areas of healthcare like clinical trial design, digital health solution or support programs.
Patients invest a lot of time, energy and often own money to listen and learn and become very educated in healthcare. There is a very strong voice coming from patient communities saying that there is a strong involvement in healthcare necessary. Because when patients are centered, their healthcare must change too. It must be personalized and individualized as much as possible. Patients expect to have a right to say in a matter voice what’s good, bad, expected and needed.
They want to understand and see how they can use their voice to change the things to have better healthcare and this needs an open exchange of information. With all stakeholders. It is a change very often: from patient to an expert. Lots of Patients do own research, are involved in patient led projects, writing white papers and are also involved in an intensive information exchange with a big community. They know best, what the needs are and they are open to share it in a good discussion. Because Patients Voice matters …
There is still something to do …
We still have to do some jobs. But there is a movement going on. One example is the patient doctor conversation. Initiatives have started to create tools to prepare appointments and in these groups, patients and doctors work together to identify important points. In clinical trials, patients are involved in the design as early as possible. Digital health solutions are also sometimes co-designed by patients. We are living in a very fast changing world with people who have to live with solutions others designed for them, because they weren’t heard or asked. This must be changed and can be done together. It means also to invite patients to congresses, give them the opportunity to speak about their needs and also to listen and to learn – not to study them – to be in a dialogue. To live centered healthcare means to have a lively discussion and a permanent information exchange. It means to see different perspectives and find new ways. To involve patients more often at medical congresses is an option too. To listen to them in combination with facts and details of R&D or present shiny projects reveal opinions and needs. To give them easy access means to have a dialogue, to create new insights and bring stakeholder together.
Also, internal processes of the pharmaceutical companies must be much quicker, much easier, understandable and easy to deal with. One of the bigger jobs. Pharma has to understand that the rules they have are too complex. It is important to create comprehensible processes.
Stopped by Corona or is there a chance in the pandemic?
As the pandemic and the lockdown happened it was like a full braking of life. Corona has changed a lot. Patients were and are scared to go out because of the risk of an infection, Doctors and hospitals were busy to be prepared for corona. The Pharmaceutical industry started to find a new medicine against the virus. Everyone was struggling, but patients stand in front of closed doors at doctors’ offices also at their physiotherapists, tests were postponed, had problems to get their medication, etc… Some problems are solved now, but the situation was hard and we all have to develop much better plans for worst case scenarios just for the case.
In this time, patients were also asked by the industry to find out how to help. This was a struggle too. Patients had to start to find new ways to help themselves which means also to invest more time, energy and engagement. It was hard to always give the right answers. How to give answers if you don’t have a plan for yourself?
On the other hand, Covid was and is an opportunity. It was a stress test in the relationship between patients, doctors, HCP’s and the industry. Because the needs have changed and it has never been so important to keep knowledge up to date. People, patients, doctors and the industry had to collaborate together and find out how to identify needs quick and help much faster.
It was an accelerator for digital health solution and it is time to move forward together to find ways for better healthcare in the future. To make it real patient centric and not use the term more for marketing or let patients feel like this.
Don’t forget to have a look at Birgit’s blog about Multiple Sclerosis: https://leben-arbeiten-mit-multiple-sklerose.blogspot.de/