ARCS Australia is a professional development organisation for people working in the therapeutics industry. Each year they hold an annual conference to upskill and inform the workforce on topics relevant to career development, therapeutic development and access. Topics spans the entire lifecycle of therapeutic development, from research to regulatory approval, to access and reimbursement issues, as well as career/professional skills and start-up business operations. Over the past few years, they have offered scholarships to consumers to cover the cost of registration, in support of greater consumer engagement in the therapeutics industry. This year, in recognition of the fact that travel to conferences can be prohibitive for health consumers, AccessCR led a fundraising campaign to help support travel costs for those that were awarded the ARCS Consumer Scholarships. Deb was one of the consumers supported through that fundraising, and we asked if she would mind sharing a little about the value she gets from attending conferences like this as a health consumer. The rest of this post are Deb's reflections in her own words.
Attending the 2022 ARCS conference was the first face-to-face opportunity I’ve experienced in over 2 years. Not that the pandemic can be blamed entirely since I have lived regionally most of my life and have not always had the wherewithal to attend national or international events. From formal consumer representation in both Genomics and CHF Rural & Remote groups to formal peak body roles leading to independent advocacy for Duchenne muscular dystrophy, I regularly attend meetings and events in virtual mode – half the time in the wee hours if they are happening overseas. Since retirement from Education Queensland as an information specialist, I have broadened my focus and participate in eclectic health consumer consultations if there are overlapping concerns. Virtual event attendance is welcome for substantive and innovative presenters but it is very difficult to have ones’ questions selected or fully understood where interaction is limited and often communication between delegates is switched off.
From this geographically disadvantaged perspective, I thoroughly enjoyed the ARCS convention at the Sydney International Convention Centre, made possible via an ARCS consumer scholarship (which covered the registration fee) and travel funding assisted by fundraising initiated by AccessCR, and contributed to to by others including Rare Cancers Australia, Medicines Australia, TrialDocs Pty Ltd and Lucid Health Consulting.
- Physical attendance reminded me of the real-world benefits of conference attendance:
- * Immersion in a spectrum of future directions in the therapeutic sphere including - rigour, vigilance, genomic precision, translational and regulatory issues, decentralized clinical trials and telehealth, trial and consent platforms recruitment diversity, population screening, Real World Evidence and of course -patient partnerships;
- * Big picture socio-economic reality checks like: the fact that medical data doubles every 72 days and the need to build better rules around storage, consent and interoperability of this data let alone genomic data; or that 40% of GDP will be spent on health by 2040 so that spending now is an investment not a cost;
- * Acknowledgement from high ranking medical and political figures surrounding the inequity of access geographically or that state and federal health services are out of step.;
- * The ability to ask a question in person and not have it misinterpreted accidently or deliberately;
- * Catching up with panellists in the breaks and networking socials to ask questions current for the communities I champion;
- * Spontaneous swapping out of a badly chosen presentation once or twice to attend a more useful concurrent session;
- * Sharing primary information live on twitter and affirming the insights from other attendees;
- * And late in the day when a layperson can feel the presenters starting to sound like talking under water, networking with exhibitors and presenters- regulatory and copyright services, health jurisdictions, industry services, software services, academics, politicians and of course research and patient engagement consultants such as AccessCR;
- * And more….
Less formally than consumer panellists like Julie Cini (SMAAA) and Jessica Bean (Patient Voice Initiative), I tried to reinforce the patient’s concerns: access, timeliness, outreach for populations who live remotely (our country is sometimes an outpost for multicentre trials), diversity (genomics, onset, heritage, age, ability, gender, etc). We all have wide experiences and after 30years of immersion and identifying patterns in the domain of my son’s genetic condition, I reinforced in all my conversations the need to involve both independent and objective consumers and professionals (eg geneticists) in the co-design and analysis of research/treatment in order to understand thoroughly and proceed further. Failing on the “nothing about us without us” truism continues to impede NDIS and just about any endeavour on behalf of a target population by the well-meaning in all organizations. The new national (and state) genomics institutes should advance visions of precision medicine and person-centred treatment to become embedded in culture and actualization for greater impact in an era where blockbusters are far and few between.
In a practical sense I was able to swap links to useful resources, online tools and publications. At least in my condition it is almost certain that participants in all study arms progress further for simply being in a clinical trial (sometimes more than active/drug arms). More expert reviews are needed to investigate the biases and effects alongside outcomes, including the interests of investigators, caregivers, charities, sponsors and regulators.
Talking to more professionals has confirmed to me that our critical literacy may be hampered by publishing. Just as using consumers to co-design, analyse and actualize research from the beginning, the most authentic research papers will raise and discuss the limitations of the research at length in the interests of present and future patients. I hope to continue to investigate through the contacts established, a way to improve accuracy and currency of the background condition information prior to publication either by authors, reviewers or editors - if only because so many more patients are reading outdated information and experiencing a range of misconceptions from: fatalism or inadequacy to pay for what is yet unproven to conversely banking only on the perceived ‘breakthrough’ – particularly since the public can access evermore open source research papers nowadays. Patient-reported outcome measures (PROMs), patient reported outcomes (PROs) and wearable data is worthy of our advocacy, but we can’t sacrifice the rigour of trial design, fail to tip hat or concede limitations for whatever reason or reason(s) as negative consequences will ultimately flow – in time and space and for all stakeholders.
I appreciated both the scholarship and travel assistance immensely as it acknowledged and built upon my professionalism as a health consumer who has sourced treatments and care for a rare genetic disorder for my son and his peers for nearly three decades.