Amazing Things Happen When We Work Together

Amazing things happened when the international HS community on Facebook were given the opportunity and freedom to participate at the University of Salford 2018 Manchester Science Festival community science showcase as part of GameLab to engage the public in ways that are meaningful and important to them raising awareness and education about Hidradenitis Suppurativa (HS), a hardly known about painful, chronic, relapsing, and disfiguring, non-contagious systemic inflammatory skin condition, with profound psychological, emotional, and physical effects (Jayarajan and Bulinska, 2017) that is difficult to treat and has no cure.

I have HS and I did a Biology degree at the University of Salford, Manchester to enable me to understand HS in a more scientific way to help others in any way I can. My HS made it tough but my lecturers and University have always supported me. I am now continuing my journey by undertaking a part-time science communication and future media masters at the University of Salford and I love it! My lecturers Dr. Chloe James, Dr. Erinma Ochu, and Professor Andy Miah are amazing and give us the freedom the include topics we are interested in with our assignments. I’ll give you three guesses what my topic of interest is. They have also supported me to explore and develop my creative ideas on how to raise awareness and education of HS in our webinars and with guest practitioners. I was inspired when Figshare’s Megan Hardeman participated in a webinar about open science and how it could be used in my plans to create an app and a HS patient led platform that will consist of HS patients, research organisiations and policy makers that can be built upon by developing online video, audio, and traditional pedagogical training and learning materials. Figshare can facilitate the dissemination of these materials to the digital international HS community as part of an educational programme to empower HS patients in ways that are important and matter to them to enable upstream engagement and innovation between STEM and NON-STEM communities for social benefit, innovate social bonding, scientific citizenship, critical agency, and cultural capital to innovate and strengthen stakeholder interaction. Patients can inform the research agenda and make it accessible to a wider audience by creating an open sharing, citable digital library archive of research and research outputs created on Figshare but accessible via the HS platform (Parnell, 2018a).

We were offered the opportunity for us to participate by my science communication and future media masters lecturer Dr. Erinma Ochu. It was an amazing opportunity for the international HS community to work together to for us to be heard in our own voices and help raise awareness of HS. The Manchester Science Festival is the largest festival in England and the University of Salford are the proud lead educational sponsor. They hosted GameLab on the 20th and 21st of October 2018 at the University of Salford MediaCityUK campus at Salford Quays. The community science showcase, part of GameLab, that was about “brilliant things can happen when science meets the power of community.”

I thought about everything I had learned as a student during our 2017 Manchester Science Festival residential, what I had been learning on my masters from my lecturers, and what the HS community would like to do and how we could use the power of storytelling, poetry, art, and scientific facts about HS blended together.

How Karl Marx, who was a philosopher, socialist, revolutionary, and was diagnosed with HS in 2007 (Shuster, 2007), a 124 years after his death, making him the longest diagnosis of HS I am aware of and how he used the printing press during the first industrial revolution enabled the plight of the working class to be brought out of the shadows to be debated and bring about social change. I was inspired by how the dynamics and collaboration of Friedrich Engels, Mary Burns, Marx, and the working-class community enabled this to happen and I'm boiling over for a HS Revolution!

I posted about the opportunity on my HS Action Together Facebook Page asking if anyone would like to share stories, poems, and artwork so we could co-design and co-create the content in our own voices. I shared it in some HS groups. People began contacting me saying that they had a poem, a story and/or artwork that they wanted to share. Some people contacted me in other languages and Google translate enabled us to communicate. I received a lot of private messages from people with HS that didn’t want anyone to know they had HS but wanting to say that they thought it was wonderful what we were doing.

We seized the opportunity and amazing things happened with us using the power of community, storytelling, art, and science. We are already proactive in using social media to advocate and be activists as citizen scientists, citizen journalists, and artists trying to educate and raise awareness of HS to fight the stigma, health and social inequalities it causes due to lack of treatments, awareness, and education with medical professionals, the public, policymakers, and governments.

We co-created and co-designed the #HSMillionsHiding exhibition in our own voices to #BringHStoLight for the millions of adults and children worldwide suffering a rollercoaster of HELL living with HS by collaborating internationally over three weeks via social media working in the ways that we felt comfortable with via Facebook groups, private message, email, google documents, zoom, and using Google Translate to overcome language barriers to produce the content to present a scary and graphic disease using beautiful artwork and words to convey and express emotions, stories, and our lived experiences of HS so the public would see us as people and not just see our HS.

Marie-France Bru-Daprés the Founding President at the Association Française pour la Recherche sur l’Hidrosadénite (AFRH) shared her video for the festival “Once Upon A Time” that she had translated it from French into English.

Sandra Guilbault, Hope for HS, in the United States collaborated with a leaflet about HS and we included information about the European Hidradenitis Suppurativa Foundation (EHSF) medical HS app that can be used to help determine the stage of HS based on information inputted and give details of the appropriate treatment. It is a wonderful tool that people with HS can use via their mobile phones with a physician when seeking medical care to help raise awareness and educate about HS; to hopefully enable people with HS to get help.

We with HS are finding our voices and are thinking for ourselves on how to raise awareness and education of HS because we are dreaming of a better future for people with HS. We want to help it happen. We are collaborating internationally because #TogetherWeAreStronger and we stand a better chance as one voice! We want to be heard! We want to make a difference!

Rob Howes was a co-founder of the Hidradenitis Suppurativa Foundation and manages the Advancing Hidradenitis Suppurativa Perception & Sustenance Facebook page. Johnny Karnier is the founder of HS in Belgium, Maria Pagan Hidradenitis Suppurativa Puerto Rico — Golondrinos,

Marie Scharff HS-föreningen Sverige, Suzanne Moloney HidraMed Solutions, Bente Villumsen Patientforeningen HS Danmark, Penny White (Bring HS to Light) and (HS Journal), Kenton Bailey (Kenton’s Walk For HS, and Jackson Gillies (Jackson Gillies Music) to name a few.

The contents from the HS Millions Hiding exhibition at the 2018 Manchester Science Festival Community Science Showcase consisted of videos, five volumes of stories, poems, and artwork crowdsourced with the help of Google Translate from HS patients in the Facebook international HS community, that was blended with scientific facts about HS. The outcomes from the exhibition is that a international collaboration between HS community leaders collaborating in translating the content from English, Spanish, Italian, Danish, French, Dutch, Swedish, German, and Croatian — Polish and Hungarian translations underway by members of the wider HS community volunteering. People helped translate the content from foreign languages to English as Google translate is good but it is not perfect but we did it together! If you read the content and spend more time thinking about how it isn't perfect then you have missed the point! The point is that we were given an opportunity and we with HS did this together in our own voices to fight stigma, health, and social inequalities, but most of all to try to help others with HS. If the fact that it is not perfect bothers you then we invite you to help improve the content.

A closed to the public Facebook group has been created where posters showcasing the book covers and posters in separate albums based upon language and provide links to content on Figshare, where they can be viewed and downloaded for free. The Facebook group will be used to build on the 2018 HS Millions Hiding exhibition to innovate a creative citizen science project (Gold, & Ochu, 2017) for next year's Manchester Science Festival. The same albums have been shared on the HS Action Together Facebook page with links to Figshare so all the content can be promoted publicly via social media to encourage public conversations.

Facebook is a lifeline that enables HS patients to connect digitally, share lived experiences, learn and research their condition. Facebook has enabled them to facilitate and establish communities and networks consisting of many HS support groups, project groups internationally and created a network of international HS community leaders that the HS community trust and are used to. But Facebook has limitations as any patient research projects research data created does not have any copyright protection from plagiarism, isn’t citable or sharable in academic communities. Facebook has gained increasing interest from researchers as a place to access patient information (Hessam, et al, 2017). HS patients have been recruited from Facebook to become patient research partners in researching HS in developing protocols to develop a core domain set for HS trial outcomes (Thorlacius, et al, 2017; Ingram, Abbott, Ghazavi, Alexandroff, McPhee, Burton, Clarke, 2014). There has been instances of unethical practices of researchers masquerading as HS patients in closed to the public Facebook groups (Facebook, 2018) to access our private conversations, data mine, their shared research ideas for HS community-led projects, obtaining information of vulnerable people without their consent and permission to share the the data that the researcher has collected.

There was an international outcry from the HS community when screenshots from within a closed to the public HS group were used in a published journal. This matter was taken very seriously and the impact has resulted in making it harder for researchers and medical professionals to connect with the HS community. This damages the trust between HS patients and researchers that undermines the legitimate efforts of HS community leaders and researchers trying to engage the HS community with public engagement, citizen science projects, and research opportunities. The HS Millions Hiding exhibition built trust with the University of Salford with the international HS community.

The reason that we were able to achieve this is due to the dynamics of those involved. We did this together. I just helped to facilitate it. I’m a person with HS, a member of the international HS community, HS community leader, and a student at the University of Salford. This enabled me to facilitate the opportunity for the international HS community to engage the public in ways they wanted and in their own voices. I trust my lecturers and my lecturers are trusted by the University of Salford. So trust began laying the foundations to innovating an international collaboration for the Manchester Science Festival. Which we continue to build on. There is more to come!

My goals are to innovate an international collaboration with the University of Salford, HS community leaders and members, HS specialists, medical professionals, and Wellcome to co-design and co-create an HS patient-led platform and apps to inform the research agenda, education, and awareness of HS that will improve the patient experience, doctor-patient relationship, help eliminate fake news and misinformation by raising awareness and education of HS, enable two way feedback for all stakeholders, provide learning opportunities to empower the HS patient to better understand their condition and participate upstream engagement (Miah, 2017) in research more effectively and nurture new research questions, health and social change. Which will complement the HS patient-led platform to inform the research agenda, education agenda, awareness agenda, and policymakers agenda. If we all do it together we stand a better chance!

I have the support of a business mentor Nickala Torkington, Flourish CIC, and am developing HS Action Together into an HS social enterprise. I have just been granted a UNLTD Try It Award which will pay for the costs for HS Action Together website and some filming accessories.

I’m beginning to think that dreams can come true! That people with HS will have a better future because not only is the international HS community proactive and raising awareness but there are amazing HS specialists that are doing amazing research to try to help us. But we need more funding for research into HS urgently and by raising awareness and education could help us get more funding!

References

Facebook. (2018). What are the privacy settings for groups? Retrieved 28 November, 2018, from https://www.facebook.com/help/220336891328465?helpref=about_content

Gold, M., & Ochu, E. (2017). Creative Collaboration in Citizen Science and the evolution of ThinkCamp events — An ECSA 2016 Case Study. In: Citizen Science: Innovation in Open Science, Society and Policy. London: UCL Press.

Hessam, S., Salem, J., Bechara, F. G., Haferkamp, A., Heidenreich, A., Paffenholz, P., Sand, M., Tsaur, I., & Borgmann, H. (2017). Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information? International Journal of Dermatology. 56, 726–732.

Ingram, J. R., Abbott, R., Ghazavi, M., Alexandroff, A.B., McPhee, M., Burton, T., Clarke, T. (2014). The Hidradenitis Suppurativa Priority Setting Partnership. The British Journal of Dermatology, 171(6), 1422–1427, doi: 10.1111/bjd.13163

Jayarajan, R., and Bulinska, A. (2017). HIDRADENITIS SUPPURATIVA (ACNE INVERSA): A REVIEW OF AETIOPATHOGENESIS AND MANAGEMENT. EMJ Dermatol. 5(1), 66–73.

Miah, A. (2017). Nanoethics, Science Communication, and a Fourth Model for Public Engagement, Nanoethics, 11(2), 139–152

Martin, V. Y. (2017). Citizen Science as a Means for Increasing Public Engagement in Science: Presumption or Possibility? Science Communication, 39(2), 142–168.

Pandey, V., Klemmer, S., Amir, A., Debelius, J. W., Hyde, E. R., Kosciolek, T., & Knight, R. (2016). Integrating citizen science with online learning to ask better questions. arXiv:1609.05763

Parnell, M. (2018a). Figshare Research Revolution, unpublished, University of Salford, UK.

Shuster, S. (2007). The nature and consequence of Karl Marx’s skin disease.British Journal of Dermatology. 158(1), 1–3. doi: 10.1111/j.1365–2133.2007.08282.x

Thorlacius, L., Ingram, J. R., Garg, A., Villumsen, B., Esmann, S., Kirby, J. S., … & Jemec, G. B. (2017). Protocol for the development of a core domain set for hidradenitis suppurativa trial outcomes. BMJ Open, 7:e014733. doi: 10.1136/bmjopen-2016–014733.