During his keynote address, MDNG editorial board member Danny Sands really stressed the importance of empowering patients to learn about their health. "We need to make sure patients have access to knowledge," he said.
MDNG editorial board member Danny Sands, wowed those who attended his keynote address for the Association for Rheumatology Healthcare Professionals this morning. His discussion focused on participatory medicine and how technology helps patients become more involved with their care.
Sands started his address by discussing his patient Dave deBronkart (AKA, e-Patient Dave), a healthcare celebrity, and how Dave was actively involved in his healthcare from the start. The first secure message Dave sent using the practice Sands works in outlined an agenda of what he'd like to discuss. This is something that Sands wishes all of his patients would do; send their concerns ahead of time.
When Dave found out he had cancer, Sands advised him to go online and learn about his disease. There are many healthcare professionals who exclaim that there are a lot of "crackpot" websites, but others have said that there is some good information posted online. After Dave learned about his cancer, Sands advised him to visit ACOR.org, a free website with a collection of cancer-specific patient support communities. Although the treatment Dave received was successful, he said, "My doctor prescribed ACOR and it saved my life." Another recommendation Sands gave to Dave was to send regular e-mails to keep his friends and family informed of what was happening. This is when Dave found Caringbridge, a website where patients can write about their treatment--Sands referred to this as therapeutic journaling--and e-mail notifications are sent to those who subscribed to read a person's updates.
One thing that Sands really stressed was to empower patients to learn about their health. "We need to make sure patients have access to knowledge," he said. Referencing a Pew survey, 85% of adults who go online search the Internet for healthcare information. "More people search for health information online than going to a physician," said Sands. For the longest time, medicine was information asymetry, which means that one person has all of the information. Having the Internet as a tool, relieves doctors from having to know everything--a difficult concept for some. "It's very hard for doctors to say 'I don't know.'"
It is very important to empower patients, and technology is a major force in making this possible. E-mailing and text messaging makes it easier for patients and doctors to communicate with one another. Blogging is another way to make information available to patients. Doctors need to understand that their patients are reading blogs. Of course there are Wikis where if enough people are contributing, it's going to self-correct overtime. Sands referenced the phrase, "the wisdom of the crowd." He also discussed Medipedia where people offers their knowledge. However, there has been patient criticism because healthcare professionals are the only ones who can contribute. Finally, there is Twitter (Sands likes to call it "micro-blogging"), Facebook, and LinkedIn, all of which expand communication options. There is one concern about communicating with patients through these methods because "You don't know if the person you're communicating with is your patients," Sands said. "No validation has been created."
Sands ended his address by reinforcing the following concepts:
1) Get patients engaged
2) Patients needs to establish a participatory role in their healthcare
3) Use connected technology to empower patients
"Until you embrace connected technology, you will not understand how empowering these tools are," Sands concluded.