First published November 10, 2016

Colleen Young (@colleen_young on Twitter) is the Community Director of Mayo Clinic Connect, an online community for patients and their loved ones to connect with others experiencing illness. Mayo Clinic Connect is a unique platform that also educates users about their conditions, and has regular input fromMayo Clinic doctors and other healthcare professionals.

Colleen is also the founder of Health Care Social Media Canada (@hcsma or #hcsma on Twitter). She has conducted extensive academic research into the potential of social media to help along a patient’s journey through illness. She kindly took time to answer questions about her experiences in the lead-up to the Mayo Healthcare and Social Media Summit in Melbourne, where she’ll be speaking next week.

Colleen Young, Community Director of Mayo Clinic Connect. Pic courtesy of Colleen Young.

How has social media transformed healthcare?

The connectivity that the social web has afforded people is the single biggest innovation in healthcare.

It’s taken away the terminal illness of isolation, brought people together so they can learn, recognise their knowledge and share with others. This is true for providers, policy makers, researchers, educators as well as patients and family caregivers.

What’s the biggest advice you would give healthcare startup founders or clinicians who want to build a community for their patients or users?

Technology alone does not create community. To effectively connect people, foster discussions that build relationships and create circles of trust requires a human commitment. Many recognise the potential of online communities to affect change, such as provide support and reduce isolation, improve health, change a health behaviour or to even drive research or change policies. But behind every successful community is a leader or team of people that helps nurture the community and to constantly calibrate the fine balance between growth, activity and sense of community.

Mayo Clinic Connect. Pic courtesy of Mayo Clinic and Colleen Young

How can the risk of misinformation amongst patient communities be reduced? What are your thoughts on the best ways to moderate patient communities within hospitals, clinics, private Facebook groups or healthtech apps?

Many health organisations are concerned about disclosure of personal health or other sensitive information and the proliferation of misinformation. However, if your community has clear policies, proactive community management, as well as active moderation and community participation, these concerns are largely unfounded for online communities. Clearly stated policies make it easy for moderators to modify—and in some cases remove—posts that contravene terms of use, such as commercial postings, advertisements, or impersonations; posts that relate to illegal activity; those that contain disrespectful language, and so on.

Community managers, moderators, and core members model behaviour and can guide members who may have unwittingly shared sensitive information or misinformation. Such modelling establishes and maintains the desired tone of a community. Communities with a secure sense of community can rely on responsive self-policing to correct misguided behaviour and misinformation. In fact, rather than removing misguided information, allowing and enabling community members to correct misconceptions and provide balanced debate can be a very productive bonding opportunity that deepens the sense of community and establishes the value of collective knowledge. Undesirable behaviour does happen in online communities, but responsive community management can maintain the integrity, reliability, and value of the collective community knowledge. (Colleen has written more about this at her website.)

How comfortable were your clinical colleagues initially when Connect launched, and what helped to make them feel more at ease with patient Connect communities if there was unease?

Mayo Clinic has long been a leader in the use of social media. Connect was an extension of our social media presence. Clinicians and staff have readily embraced the patient-to-patient exchanges and strength of the community on Connect which underlines a core value at Mayo Clinic – patients are knowledgeable and participatory members of their health care and well being.

Connect presents a unique opportunity for clinicians to be invited into the patient conversations. All provider participation whether it be in the group discussions, webinars or blog pages, is done in concert with the patients.

Hear Colleen speak at the Mayo Healthcare and Social Media Summit in Melbourne, Australia next week. Tickets are available here.

We also interviewed Simon Pase, Video Producer at the Royal Children’s Hospital, Melbourne, who will also speak at the Summit.

We’re grateful to have been granted media access to the Summit.

First published November 9, 2016

We’re pleased to introduce Simon Pase, Video Producer at the Royal Children’s Hospital (RCH) Creative Studio.

The Royal Children’s Hospital Creative Studio. Pic: courtesy of Alvin Aquino

Simon and his team in Melbourne create educational videos, photography and other media for staff, patients and families at the RCH. Their work helps thousands of children and their families each year adjust to illness and the hospital experience. Their team have also produced educational content in healthcare systems outside of the RCH, and for events such as the Royal Children’s Hospital Good Friday Appeal. Producing high-quality videos for varied audiences in the medical system takes a variety of skills from media, journalism, education, and storytelling, with a large dose of compassion throughout.

Anyone with an idea for a healthcare startup or social impact project can benefit from storytelling skills, and Simon’s passion for his work shines through in his interview with us. You can also catch him speaking at the Mayo Healthcare and Social Media Summit in Melbourne, Australia in November.

Can you tell us about your career journey?

I graduated from Film and TV production in 1996 and initially worked in production, and then for a couple of years in the UK.

When I moved back to Melbourne, there were very few television jobs. So I used my skills as a copywriter in advertising. Years later, when I decided to do further study, I toyed with the idea of teaching. Many friends said “You’d be a great teacher.” But my sister had worked in teaching and didn’t think I’d enjoy it. It made me question, what would I want to do? That led to my Masters in Film and Television at RMIT.

My partner was very supportive and worked full-time while I did my Masters and worked in Marketing part-time. At the same time, the RCH job came up. I had no idea it existed.

I was working alongside photographers at Monash University who did know about this department at the RCH, and encouraged me to apply. It was run by Gigi Williams and they told me I had to do it, it would suit me. My sister had also worked at the RCH as an educational play therapist.

During my Masters’ Major project, I had the best combination of support from university and tools from the RCH. My scholarly interest during my Masters was Sports Documentaries, telling stories of the underdog, their depiction and the intersection of the struggle with sports and life. There are similarities with the RCH stories in this space.

I learnt very quickly, how do people want to be portrayed? Especially children and families.

Research into producing Sports Documentaries was a very similar parallel.

Once you start here, it’s very addictive.

When I came, I had a very great mentor in Film and TV who took me on an immediate orientation to the hospital environment. His name is Rob Grant, who’s spent 26 years at the RCH. He’s very quick to introduce you to people, their departments, what they do, and how the hospital functions. People are very generous with their time here and are very open. There’s a lot of trust.

(People at the RCH) feel comfortable including us in their work.

I learnt how to demonstrate a procedure, and how to tell a person’s story.

We also work with other hospitals, which is a privilege- we learn how to win the trust of other people, and are always conscious of the privilege of working with others to promote their hospitals.

When I came to the RCH, I found it’s a place of incredible optimism.

You film kids having open heart surgery for congenital heart disease, and it’s so profound to watch.

Filming a surgical procedure at the RCH. Pic courtesy of Simon Pase/RCH Creative Studio

I thought, this hospital can do so much. The optimism, the people committed to research.

Also, you get to observe specialties that normally don’t get as much heroic publicity, such as mental health, yet their work is just as valuable.

How do you approach a story on a less-publicised or under-acknowledged medical issue?

As an example, here’s a project we did for the Festival of Healthy Living, an Arts Program for communities that have experienced hardship such as bushfires. These communities tend to have a higher incidence of mental health issues and even youth suicide. The program tries to build a lot of structure for community and skills. We were asked to do a film about it.

At first, there was a very strong reluctance to show these people. We were concerned about exploitation, and it took awhile to figure out how to portray people who may have gone through a significant ordeal.

Eventually, we realised – humans are very resilient, and kids mean more to us than anything. If that’s the story we can tell, that parents will want to make a better community for kids, that’s a positive story. We interviewed three fantastic sets of parents, and told stories about anxiety and being accepted. And it was tremendous, telling it this way from people who’d gone through it and benefited from it, it had a really positive outcome.

“Show, don’t tell” is a rule we try to stick to.

Video is an emotive medium, it’s from the entertainment world which is emotive. Video tries to inspire people to do something, to have the confidence to come into hospital (such as through our “Be Positive” video series teaching children about hospital), and undergo treatment, (and then continue that treatment at home).

It’s fantastic that people are conscious now about storytelling.

When we tell stories, we make sure we are doing the right thing by our subjects. It’s a huge responsibility.

My favourite project- there are many- but the first time I felt satisfied about my job here, was after doing a video on how to change a tube on a liver transplant recipient, for children going home after a transplant.

It was an easier video to make, but the feedback from the liver transplant nurse two months later was amazing. She said that parents are not scared to try it at home anymore, they feel confident about managing this.

It’s really positive. It doesn’t take a lot of skill to make sometimes, but they can be the most impactful videos to make because you know the audience will use its lessons in some way.

The other one was about the triggers of anxiety in children and how the RCH manages it. We have special programs funded through the Good Friday Appeal.The Head of Educational Play Therapy spoke at an event for the Appeal and we created the “Mastery of Fear” video to show the impact of fundraising. When I came up with the idea, it was like an idea you have in your mind that you can’t explain to everybody, but you just do it. And it worked.

Learn more from Simon Pase and other international speakers at the Mayo Healthcare and Social Media Summit in Melbourne, November 2016. Tickets are available for their Summit, Residency and Film Festivalhere. Follow on social media via #MayoinOz. and on Twitter @MayoClinicSMN.

A selection of the Royal Children’s Hospital Video work can be found here. We’re grateful to the Mayo team for granting us media access to the Summit.

We wrote about two Australian healthcare startups using social media in interesting ways- revisit our article at this link.

Edit 10 Nov ’16: We incorrectly stated that Simon studied his Masters at Monash; it was actually at RMIT.