Abstract P5-17-02: Patient advocates are partners in global breast research: Value is recognised by early advocate involvement in the PREvent ductal carcinoma in situ invasive overtreatment now (PRECISION) study and related trials
Authors: Verschuur E , Collyar D , Oirsouw Mv , Pinto D , Stobart H , Wilcox M ,   On Behalf of the PRECISION Project
Published: February 2018

Background

Early introduction and international collaboration of patient advocates is essential in the investigation of safe treatment of DCIS. This diagnosis has increased since the introduction of screening. The treatment of low risk DCIS has been the subject of debate, controversy, anxiety and cost to women and health services globally. There has been much "public" as well as "professional" discussion leading to considerable distress. Some surgeons have concerns about carrying out unnecessary surgery on patients with low risk DCIS, but this is current best practice due to lack of credible evidence that monitoring can be safe. Some women feel their "lives were saved" whilst others feel "mutilated" by "unnecessary” surgery. These women cannot know the true harm or benefit of the treatment which they receive without evidence from clinical trials and biological/molecular research.

Aims

· To provide evidence of the value of patient involvement.

· To encourage recruitment in "difficult to recruit studies" by educating the public, patients and clinicians.

· To assist in the design of effective information tools.

· To increase liaison between advocates internationally to understand differences in culture, health services, and patient expectation.

Methods

The PRECISION team includes 2 patient advocates from each of the DCIS randomized trials (LORIS in the UK, LORD in the Netherlands and COMET in the US).

Our group will liaise with other groups involved in the wider efforts around DCIS. We will take part in media interviews and public debates to raise awareness and the need for evidence to change practice to reduce overtreatment of low riskDCIS. We will work with our researcher colleagues in each PRECISION work project, join the PRECISION steering group, and liaise together via regular calls. Importantly, we will encourage awareness amongst clinicians to emphasize that patients wish to be informed about available trials, and that not to do so is denying patient choice.

Results

An increase in interest and recruitment can be measured and the influence of early involvement of patient advocates can be demonstrated so that the model can be used in other trials. The biology is intricate, scientific and exciting but it is crucial that the outcome is available and understood by all women and their physicians worldwide. The results will be promoted by patient advocates through publications, social media and patient groups. Advocates will appear as co-authors on scientific publications.

CONCLUSIONS With the increase in international clinical trials, there is a need for further understanding of the differences in practice and patient need in different hospitals - as well as in different countries. We will show the value of our collaboration by demonstrating the results of patient advocate involvement in the PRECISION program.

* The PRECISION Team is a Cancer Research UK Grand Challenge Award 2017 winning team and will be jointly funded by Cancer Research UK and the Dutch Cancer Society.

Citation Format: Verschuur E, Collyar D, Oirsouw Mv, Pinto D, Stobart H, Wilcox M, On Behalf of the PRECISION Project. Patient advocates are partners in global breast research: Value is recognised by early advocate involvement in the PREvent ductal carcinoma in situ invasive overtreatment now (PRECISION) study and related trials [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P5-17-02.