Team:Newcastle/Human Practices
Human Practices
Graphical Summary
Human Practices - Silver Medal Requirement
Throughout the summer, the Newcastle iGEM team has been working alongside Parkinson’s UK, a research and support charity which aims to improve the quality of life for people affected by Parkinson’s Disease (PD) and find a cure.
To assist in the development of our indicative diagnostic tools, we have designed three biosensors to detect factors associated with early PD. By attending various Parkinson’s UK events we initially aimed to develop a greater understanding of how PD impacts people living with the disease and their carers. This includes the current diagnostic resources and support available within the local community. From this, we wished to evaluate the implications of an indicative diagnostic tool and if ‘muninn’ would be accepted by the wider public. Our final goal was to also increase the outreach of both iGEM and synthetic biology.
After engaging with attendees from across various Parkinson’s UK events. It is clear that there are already varying levels of local support within the Tyne and Wear region, these vary from a casual café meet-up to a more informative meet-up with the possibility for physical therapy-based activities. However, becoming diagnosed as well as transitioning from medical care to local support is frequently problematic.
The opportunity to attend several charity events enabled us to review the current method of diagnostics and subsequent care from the perspective of individuals affected by PD and develop an improved diagnostics method by integrating information about early non-motor symptoms. Whilst Connor’s educational outreach in a Northumberland academy, in combination with Alice and Emily’s participation in the Parkinson’s UK Geoff Cobbing Memorial Cycle has increased the understanding of synthetic biology beyond our current generation.
Why we chose Parkinson's UK?
After the formation of ‘muninn’, the team agreed it would be beneficial to speak directly to people affected by PD to understand the current limitations within our healthcare system and to gage whether ‘muninn’ would provide an appropriate solution. We chose to not pursue PD contacts via the National Health Service (NHS) as the necessary formalities of ethical approval may lead to unrealistic medical expectations. However, charity organisations such as Parkinson’s UK acted as a suitable intermediate providing that team members were only there for observation and general discussion.
John Lewis Café – Eldon Square, Newcastle City Centre
From navigating the Parkinson’s UK website, we discovered Ms Vivienne Rogerson, area development manager for Parkinson’s UK Gateshead, North Tyneside, Newcastle and Northumberland, who informed us about several local support meetings with varying levels of support and structure. The John Lewis café at Eldon Square meet-up was a very informal social activity that gave individuals the opportunity to meet people familiar with the condition, a place of mutual support.
From two bake-sales, the Go Fund Me page, and any additional donations for the memorial cycle the team raised a collective total of £387 for Parkinson's UK!!
The Fellsider Bar and Kitchen – Whickham, Gateshead
The second Parkinson's UK meet-up was at The Fellsider, a local pub in the Whickham area, a casual event for social interaction and mutual support. Unfortunately, there were no people affected by PD or carers in attendance. his was likely due to the date falling in the middle of the school summer holidays rather than a lack of awareness. However, speaking to the volunteers at The Fellsider it brought to our attention the potential difference in healthcare divisions between various constituencies in the North-East region, particularly the time taken to be referred to a neurologist as well as then being provided information for support groups after a diagnosis.
Our experience at the Fellsider highlighted that there is no lack of support for people with Parkinson's Disease, but there is a huge disconnect between national medical services and support in the local community. To evaluate this further the team decided to reach out to both general practitioners and neurologists with a PD specialism. More information about discussions with medical practitioners can be found on our Human Integrated Practices page.
The Marriott Hotel – Gateshead
As one of the larger local PD gatherings, it is common for the volunteer organisers to arrange activities that help ease motor symptoms, in past meet-ups, there has been the addition of yoga and even gardening. However, in the session we attended, Rosie Anderson was leading a local community sing-along. All 22 attendees were enthusiastic and contributed to the best of the ability, many carers and regular attendees pointed out that it was the liveliest and most vocal some people had sounded in months.
More information about Rosie Anderson and her involvement in Community Speaking Therapy can be found on our Human Integrated Practices page.
After speaking to members in attendance it was interesting and sad to learn that the NHS does not offer such activities for people living with Parkinson's, only medical treatments to manage motor symptoms. We also became aware of other pre-motor PD symptoms such as losing the sense of smell and a lack of facial expressions. Both symptoms can be linked to general age-related cognitive decline, however, the rapid deterioration is more specifically linked to PD. The team also heard a range of different people’s experiences with PD, some had a sense of relief from a confirmed medical diagnosis, whilst others had never heard of PD before. It seemed that many people knew, or at least suspected for years before their diagnosis that they had PD. People living with Parkinson's and carers discussed the pros and cons of early diagnostics. This highlighted the fact that a medical diagnosis mainly relies on the presentation of late-stage motor symptoms, and a need for both earlier diagnostic procedures and alternative medical treatments.
Educational outreach in schools
In early September, Connor was invited to give a seminar to groups of 14-15 and 16-18 year olds. This seminar included Connor's past and current iGEM projects and discussions about how synthetic biology has developed since the participants were born. This was done to introduce concepts of Synthetic Biology early so that they have the opportunity to learn more about the field and potentially decide to continue into biology at university.
The Geoff Cobbing Memorial Cycle with Parkinson's UK
Throughout August, the team were able to attend three local Parkinson’s UK meet-ups. Being able to witness how these sessions benefitted people affected by PD was touching and members of the team wanted not only increase awareness of the importance of physical activity, but also contribute to the charity through fund-raising. On both August 21st and September 2nd, the team held a bake sale in the Devonshire building at Newcastle University.
All the money raised through the bake-sales’ open donations and the team’s Parkinson’s UK Go Fund Me page was donated to the Geoff Cobbing Memorial Cycle on September 15th. Both Alice and Emily cycled alongside other Parkinson UK riders with full support from the Newcastle iGEM team.
Integrated Human Practices - Gold Medal Requirement
Project Planning
Next step: The team explored potential biomarkers starting with eicosane, the chemical substance Joy Milne was able to detect as an association with seborrhoeic dermatitis on people affected by PD. Whilst the human practices subteam contacted Parkinson's UK (a national PD charity) as a starting point to see how the current diagnostic procedures impacted on people affected by PD and what could potentially be improved.
Parkinson's UK, Tyne and Wear - Eldon Square John Lewis Café
Overview: The team's first port of call was Parkinson's UK, a national research and support charity which looks at improving the quality of life for people affected by Parkinson's Disease (PD). By attending a Parkinson's UK local meet-up in Newcastle upon Tyne city centre we aimed to gain insight into how PD impacts people living with the disease and their carers, as well as the what resources and support is available in the upcoming period of becoming diagnosed and after a confirmed diagnosis.
Outcome: The team was introduced to Ms Vivienne Rogerson, the area development manager for Parkinson's UK Gateshead, North Tyneside, Newcastle and Northumberland. We learnt that Parkinson's UK offers varying levels of support within the local community; ranging from informal social activities to more structured informative group sessions with added physical activities such as speech therapy and tai-chi to alleviate motor symptoms. Ms Rogerson has also recommended a few useful contacts of PD neuroscientists in the Tyne and Wear region, as well as highlighting larger Parkinson's UK events over the summer period.
To view all our interactions at Parkinson's UK events, see our Silver Medal Requirement!
Next step: The team attended various Parkinson's UK event over the summer to engage with people affected by PD on a more personal level and to understand the potential impact of a project like 'muninn'. We also reached out to General Practitioner's and neuroscience specialists in the Tyne and Wear region as recommended by Ms Rogerson and fellow team advisors.
Dr Dow Smith, General Practitioner in Newcastle.
Overview: Before retiring recently Dr Dow Smith was previously a locum general practitioner in a medical surgery located in Newcastle. We discussed current methods and issues associated with diagnosing Parkinson's Disease (PD), in particular using motor symptoms to diagnose PD. He thinks that other pre-symptoms of PD such as seborrhoeic dermatitis and depression lack sufficient positive predictive value to be useful.
Outcome: For our diagnostic tool, Dow made us aware that both false positives and false negative rates needed to be low for a diagnostic tool to even be considered in the United Kingdom’s National Health Service. It was also noted that an argument against developing an early diagnostics screening tool would be the lack of evidence that earlier medical treatment is of benefit. However, if people were able to determine the likelihood of developing PD through systems such as ‘muninn’, then perhaps there would be a large enough incentive for the pharmaceutical industry to start developing alternative medical treatments.
Adjustment: After speaking to Dow and his emphasis on ensuring low false positives and low false negatives we realised our initial halo biosensor would be inaccurate and false results would be high. We changed to using plate readers to measure the fluorescence level as this would increase accuracy, provide quantitative data, and is also more readily available across many hospital labs, this was later reiterated by further discussions with Dr Daniel Erskine, an Alzheimer's Research UK fellow.
Next Step: Moving forward, the team aimed to discuss the impact of a potential false diagnosis with a gene counsellor, as well as discuss the circumstances and implications of a confirmed medical diagnosis in people affected by PD. We aim to discuss the prospect of using plate readers within 'muninn' with neurodegenerative or PD specialists, and whether our proposed biomarker is suitable for a diagnostic test.
Parkinson's UK, Tyne and Wear - Marriott Hotel meet-up
Overview: The Marriott Hotel is the largest Parkinson's UK meet-up in Newcastle upon Tyne over the summer period and was frequently recommended by both volunteer organisers and people affected by Parkinson's Disease (PD). As a larger meet-up, the Marriott Hotel group often runs additional activities such as yoga and gardening as part of their monthly meetings. In the session we attended, Rosie Anderson was leading a local community sing-along as a form of speech therapy. The team also got the opportunity to talk to people affected by PD and their carers who discussed the pro's and con's of early diagnostics.
For further information about the Parkinson's UK Marriott Hotel event, see our Public Engagement!
For more information about Rosie's involvement in local community singing, see either our Integrated Human Practices!
Outcome: The team also heard a range of different people’s experiences with PD, some had a sense of relief from a confirmed medical diagnosis, whilst others had never heard of PD before. It seemed that many people knew, or at least suspected for years before their diagnosis that they had PD. This highlighted the fact that a medical diagnosis mainly relies on the presentation of late-stage motor symptoms, and a need for both earlier diagnostic procedures and alternative medical treatments.
Adjustment: Whilst the discussions at the Marriott Hotel and other Parkinson's UK didn't affect our project's experimental design, they reiterated our choice of biosensors as well as making us aware of the divide in medical treatment, social support, as well as the varying resources on offer depending on the constituency. Consequently, confirmed the teams need to speak to multiple healthcare professions or neuroscientists to confirm diagnostic test procedures.
Next step: The team wanted to interview Rosie Anderson to explore both volunteer contributions within local communities but also forms of therapy that are enjoyable by people affected by late PD. The team are still keen to discuss current diagnostic tests and healthcare procedures with neurologist specialists.
Professor Richard Walker
Overview: Professor Richard Walker is a consultant physician at the North Tyneside General Hospital and is the clinical lead for the Northumbria Parkinson’s Disease (PD) service. Our main interview focus was to understand the current method and procedure of a PD diagnosis, the range of treatments available in the UK, and what was preventing earlier medical diagnoses.
Outcome: Prof. Walker confirmed that a diagnosis would usually occur through a referral from a GP on to a neurologist with movement disorder specialism. During a consultation, many non-motor symptoms are considered such as sleep issues, fatigue, and depression. Although alone these symptoms may not appear to relate to PD, it is usually the quick onset of typically minor attributes that are suggestive of PD. Prof. Walker made it clear that after a diagnosis people were given written information to take away, but nurses and other members of staff are typically involved in referring non-medical support.
To view more examples of non-motor symptoms, please see the Parkinson's UK website!
Adjustment: The team were already planning to develop a multi-diagnostic tool, however, after speaking to Prof. Walker the team will not be stating a set amount of biosensors to use in the diagnostic test. As each true positive biosensor result will add more confidence in an accurate PD diagnosis. For now, the team will remain with a plate-reader based project as this is considered a typical piece of equipment in medical laboratories in the UK. However, for this project to expand beyond a national level the team will need to consider both how other countries' healthcare systems operate and whether a cell-free diagnostic tool may be more appropriate.
Next step: We contacted the National Institute for Health and Care Excellence (NICE), to ask them how much guidance they advise medical health practitioners to give people living with Parkinson’s on support groups or alternative therapies offered by charities such as Parkinson’s UK, as our research found that these groups were very well received by people living with Parkinson’s and their carers if made aware. Their response indicated that no specific advice on support groups was recommended as it was up to the care team to judge what was best for any individual. The team is yet to discuss 'muninn' with another experienced neurologist/medical practitioner.
Ms Rosie Anderson, local community singing therapy
Overview: The team initially met Ms Anderson at the August Marriott hotel meet-up organised by Parkinson’s UK. As one of the larger local Parkinson's Disease gatherings, it is common for the volunteer organisers to arrange activities that help ease motor symptoms, in past meet-ups there has been the addition of yoga and even gardening. After speaking to members in attendance it was interesting and sad to learn that the NHS does not offer such activities for people living with Parkinson's, only medical treatments to manage motor symptoms.
Outcome: At the Marriott Hotel meet-up that the team attended, Rosie Anderson was leading a local community sing-along. Ms Anderson has an extensive background in music and frequently leads ‘Singing for the Brain’ for the Alzheimer’s society as well as community singing workshops at St Oswald’s hospice. The session started with some vocal warm-ups and quickly moved onto songs from the likes of the Beatles, Cliff Richard and even a couple of local Geordie rhymes. All 22 attendees were enthusiastic and contributed to the best of the ability, many carers and regular attendees pointed out that it was the liveliest and most vocal some people had sounded in months.
Rosie strongly believes that singing is an effective form of speech therapy because people enjoy music and it connects them to both their past and their memories. She has been volunteering her singing expertise for just over 4 years now and is currently developing personal memory books in the project ‘Pieces of my jigsaw’, in which a person reflects on their life through stories whilst an artist draws, this will then be accompanied by a music piece composed by Rosie. Pieces of my jigsaw will debut in the Phoenix Theatre in Blyth, on January 29th at 7 pm!
Next step: It was clear that there is sufficient local support within the community for people affected by PD after a confirmed medical diagnosis. However, there is a clear disconnect between national health providers and charities or independent community support like Rosie. The subsequent lack of awareness and access to support groups greatly affects the quality of life for both people with PD and their carers. The team are looking to discuss with health care professionals whether there is a procedure for support referrals.
Dr Daniel Erskine
Overview: Dr Daniel Erksine is an Alzheimer's UK research fellow based at the Institute of Neurology at Newcastle University. His work is focussed on Lewy bodies and alpha-synuclein as a cause of neurodegenerative disease. Dr Erksine believes that the two main causes of Parkinson's Disease (PD) are in association with alpha-synuclein, and the other related to mitochondrial function. Dr Erksine has highlighted various biomarkers for early-stage PD that future diagnostic tests may consider.
Outcome: A few additional biomarkers, previously unknown to the team, came to light. A reduction of mitochondrial DNA copy number which contributes to impaired cellular function and damage to dopaminergic neurones in the substantia nigra, a structure already known to contribute to the onset of motor symptoms if damaged. As well as certain inflammatory markers such as YKL-40 and NDUF8/13, both of which are indicators of early-onset PD. Dr Erksine also agreed with the team, that 'muninn' as a multi-diagnostic tool was the best approach to accurately diagnosing PD. However, he recommended identifying a specific PD biomarker to avoid misdiagnosis of diseases such as progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple systems atrophy (MSA). All of which display similar symptoms.
For the continuation of 'muninn' or any other PD diagnostic test, investigations should focus on a multi-diagnostic tool with focus on biomarkers related to PD. Further review of medical institutes and national health providers is needed to ensure that aftercare procedures, as well as access to support services (such as that provided by Parkinson's UK), are fully accessible. After a multi-diagnostic test is able to detect early-onset PD, the accuracy of the test can be improved through automation (such as opentron robots) and can additionally begin to explore becoming a cell-free process. This would be beneficial for a worldwide PD diagnostic test and would account for less developed countries where laboratory equipment isn't so widely available.
