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!

Emily Lu

Emily Lu

Co-founder at Intake.Me
As a medical student going into family medicine, Emily joined Intake.me to leverage technology to create a more patient-centered health care system. Emily is now a resident in the UCSF-SFGH Family and Community Medicine program. She is focused on developing a primary care system that uses technology to empower patients. Emily is passionate about underserved medicine, public health and quality improvement. She was selected to present an Ignite!Talk at Medx2015 on streamlining doctor visits.
Emily Lu