By Whitney Bowman-Zatzkin

First Posted at Disruptive Women in Healthcare on 11/12/2012

Whitney Bowman-Zatzkin, MPA, MSR

Disruptive Woman Regina Holliday is often lauded by the patient advocacy community as the Rosa Parks of patient care. With her own patient and caregiver experiences tucked in her heart pocket, she travels globally to present her message of patient empowerment and inclusion in health care decision making, health records, and care plan discovery. Fearlessly she stands before officials, practitioners, and others to demand a thoughtful dialog on the role of patients in their own health care. In her own words, “Being a thought leader in social media takes a lot of work, but you can do amazing things.”

Recently, Regina launched her latest effort, the Partnership With Patients (PWP) conference. After initially mentioning a dream of this conference, Regina contacted the leadership from the Cerner offices in Kansas City and they offered their building to her. Built through passion in its purest form, the #CinderBlocks community gathered in Kansas City, Missouri – and online – to strategize on furthering the voice of the patient in the national health care dialog.

A presentation of the Walking Gallery of Healthcare welcomed the conference’s 70 attendees the first night, and the next day’s sessions featured presentations on Patient Quality and Safety, Health Information Technology and Policy, and Working with Media and The Message. The final day of the meeting was co-hosted by the HealthCa.mp Foundation and strategy sessions burst from among attendees as the un-conference unfolded. Staff from Cerner even worked over the weekend (before attending a wedding) to take PWP attendees through the Cerner Vision Experience Theatre, sharing the entire Cerner platform, and how every user – patient, practitioner, staff, and care giver – interacts with the system and works together to improve health. The event resonated as a patient advocate boot camp: Know your patient story – Know current health policy – Know how to influence and deliver your message effectively.

One can feel energized thinking about this level of grassroots movement success and the true movement behind Regina Holliday. More encouraging is digging through the “How” for this gathering. Regina is just one person, after all. She does not stand in a room with corporate sponsorship badges all over her, nor did she start building momentum from her top-floor corner office with a massive budget line. In the season of $2 Billion political campaigns and budget streamlining, just how did this event fund its efforts, cover food and beverages for its attendees, and even offer travel scholarships?

“I wanted to prove you can do a full event with a non-traditional structure,” Regina said. Sticking to the goal of keeping this effort one of individuals, not an organization’s branding or operational structure, Regina fully funded the PWP project through crowd sourced microfinancing and leveraging no-cost social media tools available to the public.

As a beta-tester for Health Tech Hatch and in partnership with the Society for Participatory Medicine, ten scholarships were funded through crowd-sourced contributions to the site. To fund the Walking Gallery of Healthcare reception and the remaining expenses for the PWP conference, like the catering bill for the entire event, Regina posted a funding opportunity on MedStartr. Started in June 2012, the first 90 days of MedStartr successfully launched 15 new partnerships, $3.85 million in outside (offline) funding from investors, two acquisition offers, one medical mission, one rare disease non-profit organization, more than $50,000 toward other efforts on the site and, of course, the PWP conference. All told, more than 90 individual donors came forward to support the PWP conference and the PWP conference not only fully-funded its effort, it fundraised beyond the goal.

Keeping the funding in a non-traditional structure presented one unanticipated obstacle for the scholarships: trying to send the funds through PayPal after they were awarded as payments to individuals can often be delayed by more than a week. Creative thinking and exploration through social media turned up one airline that supported the purchase of tickets through PayPal – and flew to Kansas City – and Regina quickly changed gears from keynote speaker and event host to digital travel agent for her scholarship awardees.

With the goal of diversifying the conversation and having everyone – patients, practitioners, vendors, and agencies – hear everything that needed to be said, the PWP conference unpackaged a strong agenda for the future of the Partnership With Patients. “We are truly at the stage to embrace partnering with patients,” Regina stated. “People on both sides have been hurt for so long, technology lets us move beyond those moments.”

To shape the next steps further, the PWP group is currently working with online surveys like Traitwise to disseminate a national survey to patients in order to define “The Patient” the movement can stand behind. The results of the survey will be crowdsourced in order to identify the next outcomes, big ideas, and areas of influence to achieve change that encourages patient inclusion in health care.

As she looks toward the future for her efforts and reflects on the crowd funding success, Regina pierces through to a new vision. “We haven’t broken through to pop culture, like the Seinfeld episode from 1996, ‘The Package,’ with Elaine trying to request a copy of her medical records. We need that level of exposure now. I really hope to bring a huge e-patient event to DC, a million patient march!

For more information on Regina Holliday, the Walking Gallery of Healthcare, and the Partnership With Patients, please visit Regina Holliday’s Medical Advocacy Blog.