A Patient Perspective on HIMSS16

Another HIMSS conference makes it three in a row for me. I feel like a veteran and enjoyed sharing my inside tips for rookies: arrive early for your sessions to get a seat, choose comfort over style in footwear, pack snacks and water, be prepared to choose sessions based on location (due to human traffic), eat lunch at off-peak hours and definitely make reservations if you want to eat dinner somewhere other than a fast food joint.

In previous years, a theme seemed to have emerged from the various sessions, but this year many folks commented that there really wasn’t one. My personal themes were:

• Hyperportalosis [patients having to manage multiple patient portals and a lack of aggregated patient data]
• A lack of value for patient input.

I attended sessions regarding user experience, usability, engagement and one round-table discussion about how to solve the patient portal problem. In the round-table discussion, I was asked to share my story of having 9 patient portals and why that is a challenge, “I was super excited when I got my first patient portal but when I got my ninth, not so much.” “If portals were rare baseball cards, I’d be ecstatic to keep collecting more but with each additional portal, I have another silo with my patient data in it.” People gasped in awe – 9 portals? Yup, 9! It was Vegas after all, so I guess this makes me a Winner?!

I wear many hats – ePatient, Consultant, Speaker, Patient Experience Strategist, ePatient in Residence at MEMOTEXT, Care Coordination Workgroup Participant, Executive Leader of the Sullivan Institute for Healthcare Innovation’s Patient Experience Council, member of The Walking Gallery of Healthcare (on twitter #TheWalkingGallery) and let’s not forget mom to four, wife, Realtor and volunteer. As a patient, there is an expectation that my input will be free. I am putting my foot down on providing free advice from the patient side of things and I’ll tell you why.

I sat through several sessions where the panelists spoke about patients and portals – “The patients just love being able to make appointments online.” “Panelists spoke about creating Patient Advisory Panels to include patients in decisions. Now I’ve been preaching user-centered design for 15+ years so this shouldn’t be news but I know in healthcare, things do take time.

One speaker focused on some of the important things to include if you create a Patient Advisory Panel – such as free parking, marketing swag and food (but this is tricky since dealing with patients, you might have to deal with food allergies and specific requests). My blood pressure started rising. Specific food requests because you’re dealing with patients? Patients are people and I’ve probably had more specific and ridiculous foods requests from a group of Execs so why are they even talking about this as such an important piece of forming a Patient Advisory Panel? I asked the panelists if the patients were compensated monetarily since the feedback had proven to be so valuable? The response I received was, “That’s a great idea, we never thought of that.” I politely walked back to my seat and looked around the room to see lots of heads nodding. Perhaps I made an impact!?

My theme for the conference became injecting the importance of including patients in design, compensating patients (we would never ask a doctor or a lawyer to provide free services, right?!) and discussing the issue of hyperportalosis and the barrier this places between patient’s and care. Believe me, I am thrilled to have access to some of my data even if I have to log into 9 separate places, but we must work towards integration and one true source of patient data.

I was thrilled to share at HIMSS16 that I just became an ePatient in Residence at MEMOTEXT and am being compensated for my insight and skills as part of the MEMOTEXT Team. Let’s continue to compensate patients and working together, we can create valuable change in healthcare!

Pictured above: MaryAnne Sterling, Regina Holliday, me, Carly Medosch & Dr. Wen Dombrowski - a small group of the many Walking Gallery members who were invited to gather at the Xerox booth (thank you Xerox!)