Here’s the latest in a series of posts about the Society for Participatory Medicine’s second annual conference on Oct. 17 in Boston, attached to the prestigious Connected Health conference. Register here. (Our #SPM2018 series has more about the speakers and activities.) This post is by SPM board member Jan Oldenburg.

The Society for Participatory Medicine Conference on October 17, “Democratizing Healthcare! Me. You. Us. Healthocracy” is a “patients included” event. What does that mean? For us, the Society for Participatory Medicine, it means that our values about participatory medicine are reflected in every aspect of the conference.

The #PatientsIncluded” designation has become a hallmark of healthcare conferences that incorporate patients in a variety of ways, with well-defined criteria at PatientsIncluded.org. Last year we posted our statement in a public Google Doc; for this year; you can see how our conference is meeting each of the criteria in the segments below:

Patients participate in the design and planning of the event

A wide variety of patients and caregivers have participated in the planning of this event. A few examples are called out below:

  • Geri Lynn Blaumblatt is a remote family caregiver for her 85-year-old mother. Over the past 15 years Geri has also been a caregiver for her husband and her father. She also is a healthcare communication and engagement consultant and is on the Board of the Society for Participatory Medicine.
  • Grace Cordovano is a board-certified patient advocate as well as a patient with multiple functional gastrointestinal disorders and ADHD as a learning disability. She is also the primary carepartner to 2 permanently disabled adults.
  • Vera Rulon has been a caregiver for her great-uncle and her mother and is an active patient in improving her own health. She is also a healthcare transformer, longevity and aging thought leader, and patient and caregiver advocate.
  • Dave deBronkart is a kidney cancer survivor and co-founder of the Society for Participatory Medicine. He is also a frequent speaker, writer, and consultant on participatory medicine issues.
  • Jan Oldenburg is an active participant in managing her asthma and is the care partner with her spouse, who has significant heart issues. She is also a frequent speaker, writer, and consultant on participatory health issues. She is on the Board of the Society for Participatory Medicine.

Patients and caregivers participate in delivery and are present in the audience

Patients and caregivers are key parts of our faculty for the event. Highlights of patients and caregivers who are speaking include:

  • Gabe Howard: Gabe Howard is an award-winning writer and speaker who lives with bipolar and anxiety disorders. He is working to reduce the stigma associated with mental health by writing and speaking about living with his condition. He’s the host of the weekly Psych Central Show and co-hosts “A Bipolar, a Schizophrenic, and a Podcast,” which explores life through the unique double lens of a young woman living with schizophrenia and a guy living with bipolar. He writes for WebMD, Psych Central, Bipolar magazine, and other publications.
  • Angela and Grace Kennedy: Grace, at 16, is an expert patient portal user, sophisticated wearable device user, and expert decision-maker in her own health and health care. She has a team of health care providers across two states that she keeps informed through her patient portal and the data gleaned from her wearable devices, as well as her own research about her. Grace comes by her advocacy honestly, as her mother, Dr. Angela Kennedy, is currently the CEO of the Commission on Health Informatics and Information Management Education. She has a distinguished career and is recognized nationally and internationally for her work in the area of consumer health advocacy and health literacy. Her work history includes directing the Center for Health Data Analytics, Department Head and Professor for Health Informatics and Information Management at Louisiana Tech University, and service on the Office of the National Coordinator’s (ONC) Health Information Standards Federal Advisory Committee and ONC Consumer Task Force.
  • Doug Lindsay. At 21, Doug Lindsay came down with a rare type of dysautonomia that left him homebound and bed bound for the next 11 years. He finally figured out what was wrong, developed novel treatments to keep it at bay, and eventually developed the surgery that fixed him. Doug Lindsay is now a sought-after keynote speaker and thought leader who speaks to organizations of all types on the role that hope and character play in innovation, problem solving, and life.
  • Casey Quinlan. Casey covered her share of medical stories as a TV news field producer and used healthcare as part of her observational comedy set as a standup comic. When she got a cancer diagnosis five days before Christmas in 2007, she used her research, communication, and comedy skills to navigate treatment. She wrote Cancer for Christmas: Making the Most of a Daunting Gift about managing medical care and the importance of health literate self-advocacy. She produces the podcast Healthcare Is HILARIOUS!, is an active member of the Society for Participatory Medicine, is the health literacy expert for the Patient Empowerment Network, and is part of the Lown Institute’s Right Care Alliance. She’s also a popular speaker and thought leader on healthcare system transformation from the ground up.
  • Kristina Sheridan: Sheridan is an experienced long-term caregiver and patient advocate and has worked for 30 years in systems thinking and engineering. She is the principal investigator for the MITRE research project, Empowering Patients and Providers to Partner for Best Care, researching how information technology solutions can empower patients to collect and track active patient-generated data, effectively manage their conditions between appointments and fully partner with their care teams. Ms. Sheridan will talk about her experience in using data to manage her daughter’s complex chronic illness, with a video cameo from her daughter, Kate.

Travel and accommodation expenses for patient and caregiver speakers are covered and scholarships are offered to accommodate patients and caregivers

We are covering travel for patient/caregiver speakers who have requested that support and are funding 5 patient/caregiver scholarships. We are actively working to figure out means to pay those expenses ahead or contemporaneously with the conference.

Disability requirements are accommodated

The Boston Seaport is fully disability supported and the conference is making every attempt to accommodate disabled individuals, including those with gluten intolerance

Virtual participation is supported using free streaming video where possible

We will be live-streaming several of the sessions at the conference and have an army of Twitter experts who will be tweeting the event.

As you can see, we are working hard to make sure that “Democratizing Healthcare! Me. You. Us. Healthocracy” is a patients-included event in spirit, policy, and practice.


Are you attending Connected Health? Join Us on October 17 for #SPM2018!

Learn more about SPM’s second annual conference on Oct. 17 in Boston or register here today ($100 for members/$150 for non-members). In our early years it’s priced as a great bargain for a full day. And see this blog’s #SPM2018 series for more about the speakers and activities.

 

 

 

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