post

New report calls for wider inclusion in clinical trials

National blood cancer charity, the Basil Skyers Myeloma Foundation, has published a new report which looks at diversity in myeloma clinical trials and clinical research in the UK.

Myeloma UK news, Patient advocacy news, Research news // 15th September 2017

National blood cancer charity, the Basil Skyers Myeloma Foundation, has published a new report which looks at diversity in myeloma clinical trials and clinical research in the UK. The report, Count Me In! Informing the future of Personalised Medicine from Bench to Bedside, launched during Blood Cancer Awareness Month.

The Basil Skyers Myeloma Foundation was set up in 2010, by Dr Sophia Skyers, who lost her brother to myeloma. The organisation provides practical patient support and aims to raise the profile of myeloma, and identify gaps in clinical research.

Following the report’s launch, we spoke to Dr Skyers about the report and how she hopes it will impact clinical research in myeloma going forward.

The Basil Skyers Myeloma Foundation released a report in 2015. How does this new report take previous findings forward?

The Listen Up report highlighted that myeloma can affect anyone but, for reasons we do not yet know, myeloma occurs with double the frequency in black African and black Caribbean people, in comparison with the population as a whole. It also focused on major inequalities across three areas of patient care: access to services, access to support, and an under representation in clinical trials and clinical research.

The new report, Count Me In, looks at the ethnic diversity of patients that are recruited to clinical trials in myeloma. It has been endorsed and supported by national patient organisations, a group of clinical nurse specialists and consultant haematologists, and Public Health England.

What are the key aims and objectives of this report?

The principles of equality and inclusion are pivotal to the planning and delivery of healthcare. While there is an acknowledgement of the importance of access to services, there are few studies that explore the reasons for the under representation of certain groups and communities in clinical trials. This has implications for the development of effective treatments for all patients, and exploring this topic is a key aim of this report.

Can you talk us through some of the main findings?

We found that the pattern of under representation of black and minority ethnic people in clinical trials is evident not only in blood cancer trials such as myeloma, but is mirrored in other disease areas, for example, in prostate cancer. The report points out that clinical trials, including trial recruitment, are not systematically monitored by ethnic diversity. It also found that in those circumstances where ethnic data are collected, the data are not reviewed or used to improve diversity in clinical trials.

In terms of patient perspectives, the report found that there is a lack of awareness of clinical trials among black African and Caribbean people, but that there is a real desire to know more. At the same time, because of historical experiences, there are sometimes fears about engaging with the medical community in a clinical trial or clinical research context, and these fears may not always be articulated by patients in a consultation setting.

The report concludes that the case for wider inclusion is critical to developing a more detailed understanding of myeloma.

How do you hope that this report will help to diversify clinical trials in myeloma?

The report has been informed by a broad spectrum of haematology patients and non-patients, and we also see it as having implications for other blood cancers as well as other disease areas.  It is our hope that the findings will give all the stakeholders involved in the clinical trial and clinical research process pause to reflect on what they do, why and how they do it, and to think more laterally about the research questions posed, as well as about who is included in discussions about clinical trials and clinical research. We can then begin to posit new ideas and contribute to developing new research insights.

Q5. What are the next steps?

The report, which is supported by practical recommendations, is our offering to patient groups, and all of the stakeholders that play an important role in shaping the healthcare agenda. The next steps will require an honest and open dialogue, as well as an investment of time and resources on the part of everyone involved in the development of clinical trials and clinical research.

Q6. Do you have any plans to undertake more reports like this in the future? If so, how can people affected by myeloma get involved/find out more?

The Basil Skyers Myeloma Foundation does not have any immediate plans to undertake another report but will continue to add to debates about wider disparities in health.

If anyone has an idea that they would like us to explore, please email the team and we promise to review it, or refer it to another stakeholder who may be best placed to consider it.

To find out more, or read the full Count Me In report visit the Basil Skyers Myeloma Foundation website.