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Improving access to innovative cancer treatments for North Manchester residents

17 Dec

Chemotherapy

by Andrew Wardley, Medical Director of NIHR / CRUK, Christie Research Facility

A new collaboration of the National Institute for Health Research (NIHR) Manchester Clinical Research Facility and NIHR Greater Manchester Patient Safety Translational Research Centre aims to improve access to the latest cancer treatments and clinical trials to people in the North East of Greater Manchester.

The NIHR Manchester Clinical Research Facility (CRF) is the largest and most comprehensive Clinical Research Facility in the UK, trialling research discoveries for the first time in humans through experimental medicine. The NIHR Clinical Research Facility at The Christie is a centre of excellence for cancer research studies.

Recent work shows that there is three times more research participation in affluent areas close to the four Clinical Research Facility sites in Greater Manchester than in more deprived and/or ethnically diverse areas.

Systemic anti-cancer therapy (SACT), which is chemotherapy and other molecular-targeted treatments, have greatly improved the chances of surviving cancer in the last two decades. The Christie, the largest single site cancer centre in Europe, provides chemotherapy and targeted treatments to people through Greater Manchester and parts of Cheshire through the Greater Manchester Cancer SACT pathway. In 2011 there was a major strategy to increase delivery of these treatments closer to where patients live, reducing the challenges they face to access treatment. The greatest challenge to improving access affects the more deprived and/or ethnically diverse parts of Greater Manchester.

Access to innovative new treatments in clinical trials extends and improves the length and quality of life for cancer patients. Current chemotherapy patient, Anna Friedenthal, says:

“Over the last 15 years I have taken part in five clinical trials at The Christie. I firmly believe that without these trials I would not be here today. They are our hope for the future – mine, my children’s as well as so many other families in similar circumstances. I feel so lucky to be a patient at The Christie, it is such a centre of excellence in every way.”

The lack of access to innovative cancer treatments affects members of the population that are least able to navigate the healthcare system. This represents a patient safety issue. We aim to reduce this social inequality and increase access to cutting edge cancer medicines by reaching all of Greater Manchester’s population. Specifically we will provide experienced cancer leadership to work with local health care and community teams to educate and facilitate access to the very best treatment innovations.

Safety Informatics lead elected to American College of Medical Informatics

16 Nov

ACMI Award NP_cropped

Safety Informatics lead Niels Peek was recently elected to membership in the American College of Medical Informatics (ACMI). This is a college of elected Fellows who have made significant and sustained contributions to the field of medical informatics. It is the central body for a community of scholars and practitioners who are committed to advancing the informatics field. The membership award was handed out during the annual symposium of the American Medical Informatics Association in San Francisco, 3-7 November 2018.

Understanding patient views of online discussion forums to help improve patient safety

16 Nov

close up businesswoman hand holding smartphone touch screen on display for checking work with virtual reality interface for future technology concept

by Sally Giles

A new study exploring patient views on using online discussion forums, to find information relating to side effects from medication, will begin shortly. It is hoped the findings will lead to new ways of improving patient safety.  We know many people with long-term conditions use online discussion forums to share experiences and support. The free-text information from online discussions could provide a valuable source of information about side effects from medication.  However, the experiences of those using online forums varies considerably depending on which long-term condition(s) they may suffer from.

In light of this, it is important to understand the views of different groups of patients in relation to sharing information about medication side effects from online discussion forums.  The plan is to conduct 5 focus groups with patients from 5 of the online communities in Health Unlocked, including patients with lung conditions, thyroid disorders, fibromyalgia, mental health issues and rheumatoid arthritis.  We also have a patient and public involvement (PPI) advisory group. This group consists of 6 members of the public who are part of the five online communities. Their role will be to contribute to the design of the study and its materials, as well as involvement in focus group facilitation and analysis. The PPI group will also play a key part in the dissemination of the findings and development of any future work.

If you would like more information about this study, please contact Sally Giles.

If a computer gives you a diagnosis, should it also give you an explanation?

15 Nov
Citizens Jury_cropped

Jurors from previous Citizens’ Juries

by Malcolm Oswald

Artificial intelligence (AI) plays an increasing role in our daily lives. Computers are being trained how to do many things, including making medical diagnoses. For example, AI can diagnose skin cancer from skin images as reliably as dermatologists, and this clever software is only going to get better. But how do we know whether a diagnosis we get is accurate? If we are given it by a human doctor, we can ask for an explanation. However, the most advanced AI systems are very complex and do not just act according to pre-defined rules, but continue to “learn”, and it may not be possible to explain to a patient how the computer reached its diagnosis.

If you were given a diagnosis by a computer, and were given the choice, would you always prefer to be given an explanation of how the computer reached its diagnosis even if that meant the computer’s diagnosis was likely to be a little less accurate?

That is one question being put to two “citizens’ juries” being commissioned by the NIHR Greater Manchester Patient Safety Translational Research Centre (Greater Manchester PSTRC) in early 2019. Citizens Juries c.i.c. will recruit 18 people from around Manchester – chosen to represent a cross-section of the public – to come together for five days to hear expert evidence and tackle difficult questions concerning how AI should be used within healthcare. The process will then be repeated with 18 different people from around Coventry to see whether they reach the same conclusions.

The Greater Manchester PSTRC is collaborating on this project with the Information Commissioner’s Office which has the challenging task of regulating the use of AI. The results of the juries will feed directly into national guidance that the Information Commissioner’s Office has to produce on citizens’ rights to an explanation when decisions that affect people are made using AI.

For more information about citizens’ juries, see the Citizens Juries c.i.c. website, or if you have a specific enquiry about this project, email Dr Malcolm Oswald or the principal investigator, Prof Niels Peek.

How can stories make a difference?

1 Nov

A blog about homelessness, health and invitation to an important event on 14 November 2018.

Objectified_small

by Matt Turtle, Co-founder, Museum of Homelessness

Between the 10 and 14 October, the Museum of Homelessness took over a gallery on the second-floor space at Manchester Art Gallery to launch its latest project – Objectified. Objectified was an interactive exhibition that explored health, homelessness and marginalisation. The last part is very important, the show explored how and why this happens and looked at the science behind stigma – where it starts and how it develops.

To stage Objectified, 20 objects were collected that each said something about homelessness and health. Visitors were invited to fill in a neuroscientific questionnaire upon arrival, listen to the stories of the objects and discuss their experiences in groups. The response was powerful, and moving discussions were held about the best response to homelessness in the city of Manchester.

Homelessness has risen 169% since 2010 and people are looking for answers. Just a week after the exhibition finished, Manchester Evening News reported two more deaths on Manchester’s streets.

It is in this climate that another event will be staged – Actions for Change. Actions for Change is an all-day event exploring homelessness, primary healthcare, patient safety and mental health through a range of interactive workshops, discussions and presentations. Many of the object stories will be shared again and their implications both for clinical practice and wider change will be explored. A range of speakers will offer their unique perspective on the issue, and will respond to the object stories.

Actions for Change takes place between 10am and 4pm on Wednesday 14 November. It has been developed in partnership with the NIHR Greater Manchester Patient Safety Translational Research Centre and the Public Programmes Team at Manchester University NHS Foundation Trust to explore how a museum object – and its story – can affect positive change in healthcare settings and research.

If you would like to attend please visit the registration page to get your free place.

Read a full write up of Objectified at Manchester Art Gallery.