Thanks to the energy of our wonderful epatient community, particularly our repeat guest host Mark-John Clifford, and some wonderful new additions to the chat, most notably long-time advocate Amy O’Conner of @modernmeds, we had a very lively tweetchat yesterday about patient activists, what it means to be one, and some other issues surrounding patient activism. Some key questions answered included:
- What does it mean to be a patient activist?
- What is needed to be a patient activist?
- How does one become a patient activist?
- Why are patients coming forward now as activists?
- What are our hopes for the future of patient activism in 2014?
Some key highlights included sharing this wonderful post by ALS activist Barbara Brenner on Health Activism: Not for the Faint of Heart, and the following recommendations for patient activists in 2014:
- Build local health activist communities to promote local change
- Educate providers about the world of empowered patients and personalized medicine
- Teach other patients and caregivers that they are not powerless in their healthcare
Overall, an inspirational start to the new year of #patientchats! Join us next week, Jan 24th, 10am PST / 1pm EST for the next patient chat on: why we share our patient stories.
Transcript of last week’s chat below the page break.
What does it mean to be a patient activist?
- @abrewi3010: An activists wants to change a system, an ePatient wants more patient centered participatory medicine.
- @markjohn1: For me it means helping other patients to take an active role in their health care. Instead of just taking care of me.
- @AraSevera13: Activists reach out and teaches…an ePatient is actively invoked in their care…activists teach people how 2 be ePatients.
- @AraSevera13: i.e.most folks don’t have a clue what personalized medicine or participatory medicine is. Activists teach those what these are.
- @abrewi3010: Activists are more policy or ideologically driven, an epatients focus is on themselves or individuals.
- @ModernMeds: Patient activists share their experiences & knowledge to empower others to make a difference
- @westr: As far as I’m concerned, I’m BOTH a patient activist & an ePatient. I think a lot of us are in #hcsm
- @abrewi3010: Being an activist/epatient is a powerful position, must be willing to accept that responsibility.
As an activist, what helps you accomplish changing the system?
- @abrewi3010: Patience and motivation are a must. Also need the willingness to engage new groups in order to change the conversation.
- @darlakbrown: Understanding the system in the first place!
How does one become a patient activist? Can they be recruited or do they come forward on their own?
- @MarriageKids: Learn your legal rights, learn how your clinical systems work, demand time for your needs.
- @abrewi3010: A3 anyone involved with #medx has my admiration. We need more people to attend/witness that conference
- @ModernMeds: A3a @alsadvocacy shared this incredible post on activism from #ALS advocate Barbara Brenner http://t.co/68EA2zUJzb
- @DoILookSick: I think I’m one of the few who was an activist before I was an ePatient.
- @abrewi3010: Patient centered activists come forward. Professional (paid) activists are recruited.
Why are patients coming forward to take control?
- @westr: I gotta say #Healthcare for CHRONIC conditions is not good! IMO our present healthcare system was built on acute care model
- @Modernmeds: Patients have a unique POV on #healthcare system bc they’re experiencing it!
- @darlakbrown: I think in part because they feel they have to take control in order to get results and care in such a huge system.
- @AraSevera13: Patients are taking control because the medical system is failing them horribly… I am a prime example
- @AraSevera13: I think that’s a huge problem is what I call “micro-specialization” and lack of Dr.-to- Dr. communications
- @abrewi3010: A2 it’s our bodies, we should come forward.
- @abrewi3010: A2 as consumers we are also tired of the prices. We want to know what we are getting for the $
- @darlakbrown: I also think patients are more empowered with technology & more connected
- @abrewi3010: A2 SoMed has also energized patients like never before. We now bring disease communities to visits
- @Westr: and that’s exactly why I summarize simply by saying: “Start Healthcare Over”
What do you hope to see in the world of patient activism in 2014?
- @westr: Medical establishment taking us seriously.
- @Arasevera13: Anyone else feel that it is the doctors that need re-education about participatory/personalized medicine?
- @DoILookSick: I’d like to see more people changing the way they think of being a patient – see it as something with options and support.
- @Abrewi3010: Im hoping more med students/profs will join SoMe for things like #patientchat. Also good to get them embedded with disease communities
Thanks again for joining us and see you next week!
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