Tuesday, March 1, 2016

How To Have A Patient-Focused Conference: Thoughts On Day Two

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The kick-off of day two of the ePharma Summit started an inspiring dialogue about peer support for patients and having mindful and intentional impact. Matthew Zachary spoke about his "Stupid Cancer Story" and how patient/peer support groups saved his life. Judy Sewards spoke on how getting too focused on our numbers and technology can distract us from providing meaningful impact to the industry and to patients. I was excited to extend my enthusiasm from day one onto the agenda for day two.

As we moved forward throughout the day, I became attuned to a few missing pieces and, unfortunately, a few disappointing factors of the event. Patient Included was mentioned at the opening remarks for day two, with a fantastic emphasis on the fact that ePharma and WEGO Health invited patients on scholarship to attend the conference and provide coverage of their experiences and perspective in real time (like me!). This year was the first year that ePharma brought the patients to the table. 

It's important to note what it means to be Patients Included™. If you review their website, you will find specific criteria and clauses that makes an event or conference Patients Included™. There is also accreditation that comes along with that. For example, 

  1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
  2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
  3. Travel and accommodation expenses for patients or carers participating in the advertised program are paid in full, in advance. Scholarships are provided by the conference organizers to allow patients or carers affected by the relevant issues to attend as delegates.
  4. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other program elements are open to patient delegates.
  5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.
I understand this can be unintentional, but we need to be clear and concise if we are to claim a patient is welcome and collaborating at a conference.

A good friend of mine who was also invited to attend the conference on behalf of ePharma had similar experiences on day two of the conference: one of the worst being the fact there was nothing for her to eat during the served lunch due to the fact she is Gluten Free. Another production aspect that I experienced was a photographer present, taking hundreds of photos, with an attached flash facing towards the audience, and additional flash bulbs lined up on the perimeter of the room. It was so strong and strobe-like that I was literally on the verge of a migraine. This is not patient-friendly. And this patient wanted to focus on the sessions, but could not ignore the flashes.

One of the largest factors about the day two agenda that left me uneasy and with mixed feelings over the day was a session on bringing pharma into the social media space. I was excited about this session because I work in social media for a major health system, but I am also a patient and health activist. The session started off so well showing data on patient experience and the patient journey; I was nodding my head along with the speakers: YES!

The disappointment surfaced when the conversation between speakers and audience shifted towards mental health. Mental health is such an integral part of a patient's life and it's a topic that is not yet successfully covered by the healthcare industry. Here's the word that flipped the patients upside-down: crazy. When we're talking about mental health or we're talking about the patient voice in healthcare, we can't consider some patients as "crazies." As a wholly empowered and involved patient, I'm not okay with crazy talk.

Here is where I would like to recommend certain aspects of a conference be present if it is going to be patient-friendly and focused. Think about the conversations to be had: are we asking the right players? Are the right players even at the table? Patients should not only attend healthcare conferences but they should speak and present at them as well.

Let's also think about the practicality issues. Patient mobility: up and down different floors between sessions. Attendee access: chargers, outlets, a technology station. Dietary restrictions: have attendees fill out any medical dietary needs during registration. And so on.

All of the above is not to say that I'm not impressed and enjoying ePharma Summit 2016. I am inspired, excited, and ready to collaborate at the same table with pharma, healthcare professionals, providers, and marketers. Day two left me with mixed emotions, but it's with trial and error and constructive criticism that real progress is made.

I look forward to day three and the ideas to be shared!

Make sure to follow along live with this year's ePharma Summit. Read about sessions and experience on the ePharma blog here. Follow along on social media with @ePharma and #ePharma16. If you'd like to follow my thoughts and experience specifically, find me at @KristinMCoppens.

About the author: 
Kristin Coppens is a social media and digital communications professional, a health activist, an ePatient, and a multiple chronic diseases fighter and blogger. You can read more about her chronic illness journey on her blog, Chronically Kristin, or follow her on Twitter. 
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.
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