Penilla Gunther served as Member of Swedish Parliament between 2010-2018. She founded The Parliamentarian Network for Equal Care, which held a great number of seminars for patients and their associations, professionals in health care and in the Life Science industry. Penilla is a patient herself, surviving lymphoma, breast cancer, and a sudden severe heart failure that led to a heart transplant. She will be a co-chair of the Global CVCT Forum session:  PATIENT ENGAGEMENT IS MORE THAN A CATCHPHRASE: ONE PATIENT DOES NOT ENGAGEMENT MAKE on Saturday, December 5th from 4-6 pm EST. View the full program at https://www.globalcvctforum.com/program-2

Penilla Have you ever thought about the process of developing a new drug? Well, I have. It stems from a need to make people’s lives better, specifically people who suffer from a disease or an ailment of some kind. Or… at least it should have its origin in that fact.

If you have ever tried to explain that to someone conducting a clinical trial, you will often find that knowledge about the needs of the patients participating in their trial is often not very high. Unfortunately, it is also not always a priority. Doctors, manufacturers, and regulators often lose sight of this key fact. But as for any new product, you need to involve the consumer; in this case your patients.

But what is “patient engagement”? What does that really mean, and how can we ensure that patients are given opportunities to provide meaningful input into clinical trials? Well, first prove to us, using straightforward language, that the trial is useful. While that might seem obvious to you, patients may see it as an academic exercise only. If you can make people feel proud to be a part of a new life-saving or life-enhancing treatment, then you will have their engagement. One thing that “patient engagement” is not? It is not just a token patient included to comply with the mandate that “you HAVE to have patients in your trial”.

Yes, I said involve the “consumer”, but NO, it’s not like testing a new soda drink; it is so much more than that. That’s why researchers should make patients equal partners in clinical trials, from concept development, through final follow-up, and journal publication of the results. Who is a better partner to help you recruit participants? We can explain the trial to other patients with words and emotions that only someone with the condition can understand. We can answer questions, and provide reassurance throughout the trial, and help encourage patients not to drop out of the trial. We can help you make sure that you are presenting and publishing the results that will make the biggest difference to our lives, and encourage other patients to want to be involved in the future.

We can help patients understand and get excited about becoming “astronauts”; taking the first step on a journey to a new drug. To embrace the idea of helping develop a new treatment that will help not just one person, but many, many more. Together we can do it.

 

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