The stories of patients, families, partners, friends, scientists and health care professionals are quite compelling – and underline that we have a long way to go toward more systematic patient involvement across our health ecosystem. That can only be achieved through appropriate collaboration, commitment, and connection.
Doctors were not very clear in their communication about MS. I didn’t understand them. It was necessary to find easy and understandable Information. I focused on patient groups, looked for sites about patients’ rights. I started to collect all that know-how and started to sort out information, the good vs the bad. I realised how important patient information is. And I noticed that there was not much understandable and useful information for patients. Patient-level information is important for good decision-making.
The power of the patient voice is phenomenal, and inspires, motivates, informs, challenges and advises us during our awareness seminars. It may sound simple – share your experience and raise awareness; however the patient voice goes far beyond story-telling. Many patients reveal the challenges they have faced getting a proper diagnosis, what taking medicines is like, how it is to be a clinical trial participant, the hurdles of getting access to medicines, the side effects of treatment, remembering to a take their medicine(s), their unmet needs and what they’d like to see from future medicines and research.
There were never enough of us activists, but we seemed to be wherever a politician was making a speech or opening a new neighbourhood centre or celebrating an event, etc. We were rarely quiet and respectful. We were constantly protesting, dying in the streets, planning disruptive events. Not only were there no treatments, there was no respect towards the people with the disease. Things have changed dramatically since then.