IDPOC event: How dermatologists can help with patient advocacy

Vancouver will be the first World Congress of Dermatology to incorporate a patient component. The Canadian Skin Patient Alliance (CSPA) is hosting the patient component, with the support of the WCD2015 and the International League of Dermatological Societies (ILDS), the International Dermatology Patient Organization Conference (IDPOC).

The three day conference, from June 11 to 13, is a learning and networking event for leaders of patient advocacy and support groups from around the world. A condensed seminar on Monday, June 8, from 2 p.m. to 5 p.m., has been organized for dermatologists interested in becoming more involved in patient advocacy organizations.

Advantages of dermatologists helping with patient groups

“I think there is a real advantage for dermatologists and dermatology in their [home] country, when dermatologists work together with patient organizations. When they sit on the boards, when they help support the work that they do, and when they get involved, [that is a real advantage],” said Christine Janus, the director of special projects for the CSPA. “I think that they can leverage the work that the patient groups are doing to really create a better situation for dermatology, dermatology patients, and dermatologists in their country.”

The event hosted for dermatologists will feature a session called “Best in Class: Featuring Patients, Patient Groups and Organizations that have Made a Difference in the World Wide Advancement of Dermatology Patient Education Support and Care.” Speakers from that session will be leaders from the International Federation of Psorias and DEBRA International, which represents patients with epidermolysis bullosa. Another presentation is titled “Cooperation in Launching or Nurturing a Patient-based Organization, the Role of a Dermatologist?”

“In that [session], we are going to cover key elements for organizations to be successful and how dermatologists can help,” said Janus. “We have dermatologists—to be determined—and a number of patient leaders who will talk about what that is like working with dermatologists and what the benefits are from the patient perspective.” The following session focuses on key issues for collaboration such as funding and ethics.

The last speaker is Peter Ash, the founder of the Under the Same Sun foundation. “He is going to do a 45 minute presentation on the work that they have been doing for people with albinism in Tanzania,” she said.

Never underestimate the patient

Janus says the key message for the day will be: “Do not ever underestimate the patient.”

“Many of us are highly skilled and when you add passion to that we can really make things happen,” said Janus. “We can make things happen wherever you are.”

While the IDPOC is primarily geared toward patient leaders, dermatologists are welcome to register and participate in the three day conference as well.

One confirmed speaker is Durhane Wong-Rieger, PhD, the head of the Canadian Organization of Rare Diseases and the past chair of the International Alliance of Patient’s Organizations. Dr. Rieger will be speaking on advocacy issues around the world.

Another presenter is Deborah Marshall, PhD, who holds the Canada Research Chair in Health Services and Systems Research as an associate professor at the University of Calgary. Dr. Marshall will discuss her research that focuses on patient preferences and patient engagement, cost-effectiveness analysis, and dynamic simulation modeling of health services delivery to improve the effectiveness and efficiency of health care services.

Janus said there will also be workshops for participants that will provide tips on using social media for advocacy, how to address the media, and how to improve fundraising.

“I think the main piece is that if we work together we are stronger,” said Janus. “What we are hoping to do is to create an International Association of Dermatology Patient Organizations while we are at this event. We are hoping that there will be a new umbrella organization that will be out there creating more conferences like this; and also doing advocacy on a global scale and gathering information [to advocate] on a local level.”

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