Lymphoma Action – championing the patient voice in cell therapy
Lymphoma Action is the only UK health charity dedicated to people affected by lymphoma. Chief Executive Ropinder Gill and Director of Operations and External Affairs Stephen Scowcroft believe it is essential to champion the patient voice in cell therapy.
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Lymphoma is the fifth most common cancer in the UK after breast, lung, prostate and bowel cancer.1 Every year, 19,500 people are diagnosed with lymphoma2 – a cancer affecting a certain type of white blood cell within the immune system – and can be classed as either slow or fast growing.
Despite being relatively common, lymphoma is often challenging to diagnose. The large number of subtypes means each person’s healthcare experience can be very different and those with rarer lymphomas may feel less supported.3
“Our vision is that everyone affected by lymphoma will receive the best possible support, treatment and care”, says Ropinder. “Ensuring the patient voice is heard when it comes to decisions around their experience of the healthcare journey is central to this ambition.”
Lymphoma Action advocates for patient involvement in the development of new lymphoma therapies. “We champion people affected by lymphoma participating and being an active voice in all aspects of the treatment pathway, including clinical trials,” says Stephen. “This means working with researchers, pharmaceutical organisations and medicines agencies to expand patient-reported outcome measures or to develop an understanding of the patient experience in a way that improves the health technology assessment process.”
In the UK, the Department of Health’s vision of care is: ‘no decision about me, without me’. This puts patients and the public first along the entire pathway from primary care to referral, diagnosis and treatment.4 “Lymphoma impacts people differently,” adds Stephen, “therefore we support patients, friends, family and carers to add their voice to the conversation as a way of achieving better outcomes from their care.”
The dawn of innovation in lymphoma treatment
Putting the patient at the centre of their own care is essential as treatment innovations advance. This is particularly important when it comes to cell therapy. “It’s a highly innovative treatment area and lymphoma is at the cutting edge of these scientific advancements” says Stephen. “Although there are standards of care for first- and second-line treatments – until the arrival of cell therapy, there were limited further treatment options for some patients facing end of life. Now, people living with particular types of lymphoma have individualised options beyond chemotherapy for the first time.”
While medical innovations such as cell and gene therapy make product evaluation an increasing challenge for regulatory and health technology assessment agencies, many have implemented frameworks to engage patients and patient organisations in developing the evidence base toward medicines authorisation.5 “As part of a nationwide drive toward person-centred care and shared decision making, there is an emphasis on engaging patients early on in the research, development and approvals process,” says Stephen, “This ensures future treatments fully reflect their needs, preferences and values.”
“England’s National Health Service was one of the first in the world to make cell therapy available to eligible patients, followed by Scotland,” Stephen explains. “We’ve learnt how best to communicate with people, their care partners and families, so they’re fully informed and able to take part in the conversation. This has also put the lymphoma community in the UK firmly on the global stage. As part of the global Lymphoma Coalition, we’ve had the opportunity to represent the wider patient voice from the beginning.”
As well as the information provided to allow for shared decision making, Lymphoma Action works closely with industry to improve patient information. “Information that explains the science behind cell therapy can support new patients through their treatment,” he adds.
Enhancing wraparound care for lymphoma patients
“As an advocacy organisation, we want to help achieve equality of access for eligible patients in the UK,” Ropinder notes. “For patients, it’s not just about treatment access but about enhancing the options for supportive or ‘wraparound’ care. This is an area where there’s an opportunity to deliver tailored support for people undergoing cell therapy.”
“At this moment in time,” she adds, “the biggest challenge is managing patients’ anxiety and offering psychosocial support. This is a key focus area of support for all treatments and will be a priority as cell therapy becomes more widely available.”
On top of this, Stephen explains, “We know there are longer-term capability and infrastructure challenges within our healthcare systems. These layers will need to be addressed if we are to enable more effective delivery of innovative therapies for the future.”
“There are a lot of new cell therapy treatments in the pipeline and we want to make sure that we have the right systems and support in place to deliver these effectively as they come available”
Our call for change
“For us all at Lymphoma Action, our hope for the future is that we can continue to support healthcare systems to improve outcomes and help people affected by lymphoma to live well,” says Ropinder.
“Over the next five to ten years, we would like to see substantial change throughout the patient journey, from point of diagnosis through to the treatment options and therapies available,” Ropinder continues. “We’d like to see improved access to treatments that have fewer side effects and an evolution in service provision, so that holistic care, tailored to the individual, is offered as standard. This ambition can only be realised by ensuring the patient voice is brought to the fore throughout at every stage of the health and care journey.”
“Obviously, everybody wants a cure” Ropinder adds, “but perhaps a more realistic hope for the future is that cancer may instead be managed as a long-term condition. Ultimately, our goal is to work with industry and patients in order to improve the quality of life for people impacted by lymphoma.”
- Lymphoma Action. About Lymphoma. Available at: https://lymphoma-action.org.uk/about-lymphoma. Last accessed March 2021.
- Lymphoma Action. Fundraising Support Assistance: Recruitment Pack. 2018, page 3. Available at: https://lymphoma-action.org.uk/sites/default/files/media/documents/2018-05/fundraising-support-assistant-lymphoma-action-overview-may-2018.pdf Last Accessed March 2021.
- Lymphoma Action. Our strategy for 2020-2025: Changing how people live with lymphoma. Page 5. Available at: https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-06/LA%20Strategy%202020-2025.pdf. Last accessed March 2021
- Department of Health. Liberating the NHS: No decision about me, without me. 2012, page 4. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/216980/Liberating-the-NHS-No-decision-about-me-without-me-Government-response.pdf. Last accessed March 2021.
- Wale, Janet L. Thomas, Samuel Hamerlijnck, Cambridge University Press, 2021, page 1. Patients and public are important stakeholders in health technology assessment but the level of involvement is low – a call to action. Available at: https://www.cambridge.org/core/journals/international-journal-of-technology-assessment-in-health-care/article/exploration-of-the-visibility-of-patient-input-in-final-recommendation-documentation-for-three-health-technology-assessment-bodies/883EA3369EFAFCFFC8B08E7375ACDFEE. Last accessed March 2021
|This was supported by Kite, a Gilead Company|
UK-CTH-2021-02-0004 | Date of preparation: March 2021