Pandemic-proof patient advocacy

KP Tsang, President of the Rare Disease Hong Kong (RDHK) and a shining light for rare disease patient communities in the Asia-Pacific, has experienced challenges presented by the pandemic first hand. But he’s turned these challenges into opportunities to benefit his patient communities.

Discussing the barriers and solutions for people affected by rare diseases is a way of life for KP. “I have never felt stigmatised, I can just speak about the gaps between patients’ needs and current healthcare systems, he explains”.

As a child growing up in Hong Kong, it was clear to KP’s parents that his sight was not perfect. A diagnosis for the rare disease, retinitis pigmentosa (RP), came in his teenage years: a genetic disorder of the eyes that causes gradual loss of vision. RP as a group of vision disorders affects about 1 in 4,000 people in the world. KP was surrounded by people who made it clear to him that he would not be defined by his disease and who pushed him to achieve good things “My parents never believed this disease could not be treated.”

Visual impairment did not hold KP back, and he worked hard to eventually become a successful business executive. However, in time the gradual deterioration of his sight impacted his working life. “At one point, I was asked to sign a document but could not see where I should sign on the dotted line,” he recalls. KP was in his mid-30s, and this moment was a devastating turning point. He was angry and frustrated, this disease was taking control, and he could do nothing about it.

It was a realisation some years later that he could no longer allow this disease to define him; he was going to take back control and take ownership.

KP has been actively advocating for people with chronic illnesses and disabilities for over 25 years. He has worked on local, national, and international projects, making sure the voice of the patient has been not only heard but understood. Currently, he serves as the president of the RDHK. He also serves as a member of the advisory committee for the International Experience Exchange with Patient Organisations (IEEPO), an annual event organised by Roche that makes space for pivotal discussions around key topics on the patient agenda. “IEEPO created an opportunity to learn and contribute much for international organisations.” As part of the external advisory board KP and his counterparts were vital in the quick turnaround to a virtual event. The co-creation is a key pillar of IEEPO, here and in other projects and interactions Roche is engaged in early and systematic engagement with patient communities, advancing health together with patients.

There were some key learning that arouse from the IEEPO2020

• The role of patient advocates is more important than ever in elevating patient voices and driving health ecosystems towards patient needs

• Partnering with patients across the world is vital to achieving ambitious goals of personalised healthcare

• Collaborating, co-creating and learning from one another will leverage our collective experience;

• Partnering with patient communities to strengthen awareness and capabilities in evidence-based advocacy, digitalisation & data generation will be key to address patient needs to policymakers and to succeed in advancing healthcare together

The International Experience Exchange with Patient Organisations (IEEPO) is an annual event that has been bringing hundreds of patient organisations from around the world together since 2008. IEPPO 2020 went virtual for the first time in response to the global pandemic. our reimagined virtual programme for 2020, which allows us to come together as a community to explore how we can move healthcare From Chance to Choice, in order to create the future of healthcare together.

The population of Hong Kong experienced a pandemic during the 2003 SARS outbreak, leading to greater public understanding of the measures required to prevent the spread of the virus, but no less difficulty in the public’s accepting lockdown. The COVID-19 pandemic has meant that patients in Hong Kong have seen a reduction in access to services or have had to postpone treatments, as is similarly experienced across the globe. People affected by rare diseases in Hong Kong have had special arrangements, including government provided personal protective equipment for patients who have a rare disease, to facilitate access to healthcare services during this disruptive time.1,2

Beyond Hong Kong, KP was approached by a rare disease patient organisation in a neighbouring country to advocate on its behalf to overcome pandemic access issues. The rare disease community was offered an infusion service that could be administered in people’s homes instead of at the hospital.

At first, this seemed to be a proactive move on the part of the healthcare system to protect vulnerable members of society, but patients and family caregivers were asked to perform the infusion without receiving training. Thankfully, alternative solutions were found, with the clinics and hospitals aware the proposed arrangement will cause issues of patient safety and efficacy on usage of drugs upon reflection from patient groups. HCPs seriously reviewed and strengthened hygiene and precaution measures at clinics and hospitals and made appointments for infusion service on site to patients in need. This served as an example of the pressure health systems are under and how true collaboration requires working with patients when developing solutions.

Like many experienced patient advocates, KP attends international meetings as both a speaker and an expert advisor. But these meetings too have been impacted by the pandemic. IEEPO, like so many events, moved to a virtual format this year, and transformed from one event into a series of meetings, workshops and collaboration opportunities to allow for greater inclusion of patient communities. This meant more opportunity for KP to share his expertise.

“Illness is just one side of the human,” and people should live as normal a life as they can, reflects KP. For him, the future of advocacy is in long-term collaboration across all parts of healthcare, and smart use of technology allowing access to a global network of patient advocates who support real policy change. “To fill the gaps between the patients’ unmet needs and the healthcare service”, everything must start with patients. Their voices are critical.

Capacity building has been essential in future-proofing advocacy and developing the next generation of advocates. To develop and maintain engaged, informed patient leaders is simple; it comes through training that is outcome-orientated. KP and his colleagues have developed bespoke training to match the needs of individuals. The development of the next generation of advocates in light of COVID requires a willingness to fully embrace the digital skills.

KP has always been at the forefront of embracing technology and encourages the same passion in the adocavates. By inviting a wide range of experts from journalists, retired government health experts, legislators, to pharmaceutical professionals to shape change together and prepare for whatever next may come their way.More than ever we have seen COVID requires collaboration of the system and the citizen to move public health forward. The direct effect of COVID has been great on many people however there has been a huge effect on with non-COVID-19-related diseases. Going forward advocates, HCP’s and health systems are ever more aware of the impact of COVID-19 pandemic on the rare disease populations planning collaboration is required to plan for future the pandemic's effect on service and resource utilization, and patient's mental well-being, care and physical safety.

KP’s message is clear: “If COVID has taught us anything, it is that patient advocates need to work together with different partners to understand and make things happen in the healthcare sector… only through collaboration can you find similarities and address differences.”

References

1. Impact of COVID-19 pandemic on patients with rare disease in Hong Kong Citation DataEuropean Journal of Medical Genetics, ISSN: 1769-7212, Vol: 63, Issue: 12, Page: 104062