How can the medtech sector forge meaningful partnerships with patient groups beyond tokenism?

“If access to healthcare is considered a human right, who is deemed human enough to have that right?” This thought-provoking quote from Paul Farmer, an anthropologist and physician, was posed as the backdrop for a recent panel discussion at the MTAA conference.

The panel, chaired by Rozalina Sarkezians, Managing Director and Founder of Health Industry Hub and a member of the advocacy working group at Australian Patient Advocacy Alliance (APAA), featured a distinguished panel that included Monika Boogs, CEO of PainAustralia; Kate King, Senior Government Affairs Manager at Medtronic; Ann Single, CEO of the Patient Voice Initiative; and Harry Iles-Mann, Consumer Advocate and Advisor to the Department of Health and Aged Care.

As Senator Anne Ruston, Shadow Minister for Health, emphasised recently, “Any health policy developed without putting patients at the centre completely ignores the essence of what Australia’s healthcare is here to do.”

Boogs emphasised the need for clarity around concepts like “patient-centric” and “co-design,” questioning their real impact.

“We hear words such as patient-centric and co-design. But what does that mean, and how are we actually improving the lives of patients?” she said.

She noted her involvement with the Medical Devices Consumer Working Group (MDCWG) of the TGA, where discussions have led to actionable improvements.

“We’ve talked about patient information efforts, traveling with medical devices, and the five questions patients should ask their specialists before getting a medical device. The TGA is now engaging with airports about the conditions consumers face when traveling with medical devices. It’s only by having patients communicate their difficulties that we are seeing real action,” she added.

Single identified two key reasons for patient involvement: relevance and the understanding of needs.

“Health technology assessment (HTA) bodies must look at health technology in local contexts, which means truly understanding patients’ needs, preferences, experiences, and perspectives. Often, patients hold crucial information that can enhance the value of medical technologies,” she explained.

Iles-Mann emphasised the importance of relevance, value, and impact in healthcare, stating, “It’s incumbent upon us to ensure that what we are putting out into the world serves a meaningful purpose for patients.”

However, the panelists raised critical questions about how to elevate the patient voice in medtech when consumers are often kept in the dark about the life-changing devices being implanted in their bodies.

King pointed out the transformative power of personal narratives, stating, “Never underestimate the power of patients telling their stories in their own words. The stories shared by patients, carers, friends, and family can illuminate why we do this work and reinforce the necessity of ensuring patients’ voices are heard.”

Boogs shared a personal experience with her double knee replacement, recalling how her surgeon dismissed her inquiries.

“I asked my surgeon about my medical device, and he basically said, ‘I’ll look after your knees, and you look after everything else.’ I still couldn’t tell you what my medical device is, and I’m more informed than the average person,” she reflected.

Iles-Mann recounted his experiences navigating healthcare with multiple medications, explaining how knowledge can alleviate embarrassment.

“When I go through customs with my medications, I undergo numerous tests, but knowing what I have alleviates my embarrassment. When you’re powerless as a consumer, it fosters a sense of nervousness and victimisation,” he explained.

Single, with her extensive experience in the medicines sector, cautioned against making assumptions about patients.

“My number one tip would be: don’t assume you know about patients and their lives. For example, when we spoke to young patients about PET scanning, we found that their concerns about the radioactive component were not what we had expected.”

She further highlighted the disconnect that can occur, noting, “Many health technologies reach the reimbursement stage without a true understanding of the patient community. It’s not only about improving the product in development; it’s about tapping into the wealth of patient knowledge regarding unmet needs.”

Boogs and Iles-Mann critically assessed the notion of patient centricity. Iles-Mann remarked, “You have patients in the centre, surrounded by a wall that’s 30 feet high, with their points of care seated in the wings. This model is flawed because it keeps patients disconnected and disempowered.”

As the discussion progressed, the panelists explored how the medtech sector can engage with patient groups in meaningful ways that transcend tokenism. Iles-Mann, highlighting his role as a Consumer Representative Advisor within the Department of Health and Aged Care’s Digital Health Branch, emphasized the importance of leadership.

“We can partner externally until cows come home, but we must ensure that individuals with personal experiences navigate these challenges and hold leadership roles,” he emphasied.

Single referenced the insights from the pharmaceutical sector regarding partnership engagement.

“The CAPRE research indicated a high importance attached to product lifecycle involvement, but satisfaction was low. Patient communities seek recognition for their unique knowledge and desire a trusting, respectful relationship.

“Pharmaceutical companies began by inviting patients to share their stories, which was moving for employees. This should be a stepping stone to greater dialogue where we can act on patient feedback rather than merely feel good about our efforts,” Single said.

The discussion also delved into the perceptions around transparency and independence that need to be addressed. Boogs acknowledged the challenges of managing industry and patient advocacy group interactions, stating, “We conducted work with the MTAA regarding spinal cord stimulators, and despite our transparency, we faced scepticism about our intentions as far up as the Department of Health.”

Despite the complexities, Boogs remained optimistic, sharing, “There are positive learnings from these experiences that can help us refine our approaches in the future.”

King underscored the necessity of long-term engagement processes with patient organisations, stating, “We must better embed our engagement with patient organisations as a long-term partnership, focusing on how we can collaboratively understand and reflect the issues patients face in clinical trials and research development.”

Single reiterated the need for clear communication, noting, “Different companies interpret the Code of Compliance differently. Initial nervousness on both sides has hindered progress. It’s crucial to be explicit about engagement scopes to foster trusting relationships, as patient organisations and industry alike often fear crossing the line.”

In reimagining healthcare, Health Industry Hub^TM is the ONLY one-stop-hub uniting the diversity of Pharma, MedTech, Diagnostics & Biotech sectors to inspire meaningful change. The exclusive leadership and influencer podcasts and vodcasts offer unparalleled insights and add immense value to our breaking news coverage.

The Health Industry Hub^TM content is copyright protected. Access is available under individual user licenses. Please click here to subscribe and visit T&Cs here.