Patient and public involvement at the COMBACTE General Assembly 2019

By Michele Kok, Research Associate in Public Health, University of the West of England (UWE), Bristol.

My research around patient and public involvement (PPI) is for COMBACTE, a European-funded private-public partnership between academia and the pharmaceutical industry. Each year, COMBACTE holds a General Assembly hosted in one of its European partner countries. This year it was held from 12-14 March in Bucharest, Romania. I love travelling and have never been to Romania, so was naturally very excited to be able to attend! In this blog post, I shall share my reflections on what I thought was a successful trip, and throw in a couple of pointers at the end for those planning to visit the city.

Some background

COMBACTE consists of four projects. PPI is part of COMBACTE-MAGNET (Combatting Bacterial Resistance in Europe – Molecules against Gram Negative Infections) Work Package 6i. One of our major outputs was a toolkit for involving patients and the public in antimicrobial medicines development research, which our team produced in collaboration with the Bristol-based PPI Panel for Antimicrobial Drugs between September 2016 and August 2018.

The COMBACTE General Assembly 2019 featured PPI in two sessions: a one-hour open workshop on Wednesday 13 March and a short talk in the specific COMBACTE-MAGNET General Assembly the following day.

Our workshop was well attended

‘Practical aspects of implementing PPI in antimicrobial medicines research’ was the title of our workshop aimed at promoting and supporting the use of the PPI toolkit. Participants were from various organisations and job roles, including principal investigators from industry and academia, and even the Chair of the European Forum for Good Clinical Practice.

In the spirit of collaboration, we asked interested participants to identify which stage of the antimicrobial medicines development lifecycle was most important and relevant to their own research ahead of the workshop. Their selections helped us plan the topics to focus on; PPI in research agenda-setting and clinical trials. Participants were engaged and raised useful questions for discussion. There was a sense of increased awareness and interest in PPI within COMBACTE.

This was similarly reflected in the response to Andy’s talk the next morning, where several key people wanted to know how he thought PPI could be embedded in COMBACTE-NET, and what could be done to increase patient awareness of the importance of antimicrobial research, to encourage patient involvement. COMBACTE-NET is the network responsible for generating innovative trial designs to facilitate the registration of novel antibacterial agents.

Final thoughts and tips

After years of persistence and hard work, our team was very pleased with the success of this year’s workshop and the raised profile of PPI within COMBACTE. There is more to be done to ensure PPI is embedded in antimicrobial research and to promote best practice, but I left the General Assembly with a feeling of personal satisfaction (and relief) at the work done so far.

I had extended my stay in Bucharest and over the next few days, learned so much about the interesting history of the city and country. I highly recommend free walking tours in any European city you visit. Besides famous places, they take you to ones you would never have discovered on your own and give you insights that only a local could. If, like me, you enjoy trying local traditional food, I recommend papanaşi, a Romanian dessert of fried doughnuts served with sour cream and mixed berry jam!

Papanaşi

Papanaşi

Michele at Primӑverii Palace

Selfie by the swimming pool in Casa Ceausescu (or Primӑverii Palace) – notice the mosaic!

If I’m fortunate enough to attend next year’s COMBACTE General Assembly, I shall be sure to share my reflections when I return. For now, keep calm and keep doing PPI!

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Understanding obesity prevention in schools

For: Primary school staff who would like to share their opinion

Closing date: end of August 2019

What: Research Associates at the University of Bristol are planning to collect evidence that can inform future school based obesity prevention programs. They want to learn from stakeholders such as school staff on what is implementable or feasible in UK primary schools.

When: It is an online one time survey made up of seven questions. It may take 10 to 15 minutes to complete.

Where: It is online only https://sscm.onlinesurveys.ac.uk/health-improvement

Expenses: No

More information: For more information contact Sharia Ijaz s.ijaz@bristol.ac.uk or James Nobles james.nobles@bristol.ac.uk

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Are you interested in how emergency care is delivered in Bristol, North Somerset and South Gloucestershire?

Closing date: Friday 3 May 2019

For: Anyone interested in how emergency care is delivered in in Bristol, North Somerset or South Gloucestershire. If you have had recent experience of emergency care services in the region that would be great but is not essential.

What: A group of researchers and health professionals based in Bristol are looking for members of the public to help identify the major problems that need to be tackled in emergency care (Accident and Emergency Departments, Urgent Care Treatment Centres, Ambulance call-out). They are inviting anyone with an interest in emergency care to attend a two hour meeting to take place in central Bristol.

When: The meeting will take place on Wednesday 8 May 10:00–12:00.

Payment: There is no payment for time but a cold buffet will be provided at the end of the session and reasonable travel costs covered.

For more information: To find out more or confirm your interest in attending the meeting contact Helen Baxter helen.baxter@bristol.ac.uk or Mike Bell mike.bell@bristol.ac.uk

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Implementing patient and public involvement in antimicrobial medicines research

On 13 March 2019, Andy Gibson, Associate Professor Patient and Public Involvement, and Michele Kok, Research Associate in Public Health at the University of the West of England, together with two colleagues from North Bristol NHS Trust, conducted an open patient and public involvement (PPI) workshop at the annual Combatting Antibiotic Resistance in Europe (COMBACTE), General Assembly held in Bucharest, Romania. COMBACTE is a multi-million pound, European-wide, public-private partnership designed to stimulate the development of new antimicrobial drugs.

This workshop was to promote and support the use of a toolkit and practical guide for involving patients and the public in antimicrobial medicines development research, which the team produced in collaboration with the PPI Panel for Antimicrobial Drugs as part of COMBACTE-MAGNET’s Work Package 6i.

The hour-long workshop was attended by 12 participants from a range of organisations and job roles, including principal investigators from industry and academia, and the Chair of the European Forum for Good Clinical Practice. The workshop focused on PPI in two specific stages of the antimicrobial medicines development lifecycle; research agenda-setting; and clinical trials. These were identified by participants ahead of the workshop as being topics most important and relevant to their own research.

The excellent attendance and engagement at the workshop were indicative of an increased awareness and interest in PPI within the COMBACTE consortium, and across Europe more generally. This was highly encouraging to the team and set the tone for Andy’s talk on PPI at the COMBACTE-MAGNET General Assembly the next morning.

Although the PPI toolkit focuses on antimicrobial medicines development research, its content is applicable to other areas of medicines development, and potentially to other areas of acute clinical research. To find out more about the toolkit or to arrange for a similar PPI workshop, please email andy.gibson@uwe.ac.uk or michele.kok@uwe.ac.uk

 

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Are you interested in how clinical trials are designed and analysed?

For: Members of the public who are interested in how clinical trials are designed and analysed.

What: Clinical trials are vital to medical research. However, any clinical trial just looks at a sample of patients, so it may occasionally conclude a treatment works when it doesn’t (false positive), or a treatment doesn’t work when it does (false negative). The University of Bristol need you to help them decide what balance of false positives and negatives is acceptable to the public.

When: The first meeting is likely to be held in early June 2019, with further meetings every 8-9 months until the end of the research project in late 2022.

Where: All meetings will be held in central Bristol. Transport/parking can be arranged.

Payment: Travel or out of pocket expenses will be reimbursed and you will be paid £21.57 per hour to attend meetings.

More information: If you are interested or would like more information, please contact Katie Pike Katie.Pike@bristol.ac.uk

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Survey – what support and training do you want for patient & public involvement in research?

For: Patients, carers, members of the public, students and researchers, from anywhere in the country

What: East Midlands Sharebank seeks your views on what support and training you would like to help you in understanding, organising and taking part in patient and public involvement in research.

Where: An online survey containing 12 questions.

Payment: There is no payment available for taking part in this survey. You responses will be used to guide the development of East Midlands training activities for the year ahead. They will also help provide a wider picture for future developments, in the East Midlands and beyond.

More information: Click here to access the survey.

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Sandra Tweddell is Diabetes UK volunteer spotlight

Sandra Tweddell, Co-chair of the People in Health West of England (PHWE) operational group, has been put under the spotlight for her extensive volunteer work for Diabetes UK.

Sandra has been volunteering with Diabetes UK since November 2010. Having lived with Type 1 diabetes since 1961 she is very conscious of varying levels of diabetes care across the country. As a result, she wanted to work to ensure that people with diabetes receive the best possible care to enable them to understand and manage their condition. Moving to Bristol, she found no local support groups so was instrumental in developing the structure of the Bristol Diabetes Support Network, which included a Strategy group involving members of Bristol Clinical Commissioning Group and Bristol Community Health. This provided a forum for two-way communication of people’s experiences of diabetes care and developments in diabetes care.

We, too, have benefited from her tireless contributions, as Sandra has been a member of the PHWE Operational Group since 2016, and become the public contributor Co-Chair in November 2018.

Click here to read her full story on the Diabetes UK website.

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Involvement opportunity – oral health and dementia study

For: Anyone over the age of 18, who is a carer for a person diagnosed with dementia or Mild Cognitive Impairment (MCI), has a diagnosis of dementia or MCI themselves, or works within a dementia-related setting and has an interest in dementia research.

What: A Patient and Public Involvement (PPI) group to help guide researchers from the University of Bristol Dental School with their health research study, specifically around the topic of oral hygiene for people with mild dementia or mild cognitive impairment. Members will be asked to input and comment on various aspects of the research study, including study design, relevance, recruitment and public materials about the study.

When: The one-off discussion group will be held on Wednesday 12 June 10am-12pm and last for approximately two hours. An agenda will be sent out closer to the meeting date.

Where: The meeting will be held at Canynge Hall, Whiteladies Road, Bristol, BS8 2PS. There is parking available at the nearby Clifton Down Shopping Centre. Any parking costs will be reimbursed.

Payment: People attending the PPI meeting will receive a £20 ‘thank you’ voucher, an electric toothbrush and will have reasonable travel expenses reimbursed. Refreshments will also be provided at the meeting.

More information: If you are interested or would like to find out more, please contact Barbara Warnes at Barbara.warnes@bristol.ac.uk

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North Bristol NHS Trust are developing a device for rapid diagnosis of Urinary Tract Infection

Urinary tract infection (UTI) is a common and unpleasant problem affecting thousands of people. GPs and others in primary care often diagnose patients based on symptoms, as the current urine testing methods to look for bacteria and inflammation can be slow and unreliable. As a result, antibiotics are often prescribed before there is a confirmed diagnosis of UTI. This prescription of antibiotics can be harmful to the patient if there is no infection and also impacts the wider community due to increasing risk of antibiotic resistance.

North Bristol NHS Trust are developing a device that will test for UTI quickly, safely and reliably in GP surgeries to ensure the correct diagnosis and treatment for patients. To support this, they are running workshops with patients and key staff members in GP surgeries to understand how it will fit within current working practices, who the user of the device might be, and what design restraints it needs to have (such as size storage etc.)

A series of workshops will take place over the next 18 months, these will cover:

  • Understanding the context for the device, the user and design restraints
  • Providing feedback on prototypes of the device
  • Urine sample collection methods
  • Training and education for the final product.

North Bristol NHS Trust would like to invite GP’s, Practice Nurses, practice receptionists, pharmacists and any member of primary care with experience of dealing with UTI’s in primary care to attend as many workshops as you are able to.

During the workshop, you will be asked to provide your views and opinions and some of your experiences.

  • The first workshop will take place : 5 April between 9.30am and 2pm
  • The second workshop will take place 10 May between 9.30am and 1.30pm

Both workshops will take place in The Board Room, Health Technology Hub, University of West Of England, Frenchay, BS34 8QZ. Lunch and refreshments will be provided

More information can be found at https://www.nbt.nhs.uk/research-events or please contact Angelo Micciche on 0117 4149334 or Angelo.Micciche@nbt.nhs.uk

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Involvement Opportunity —therapy for psychosis

Closing date: 9 April 2019, group meets in Bristol

For: Members of the public with lived experience of psychosis

What: University of Bristol PhD student Daniela Strelchuk seeks someone to join her Patient & Public Involvement (PPI) group for a feasibility study on trauma focused therapy in people at risk of psychosis. The PPI group will: review study documentation; advise on patient recruitment and retention in the study; and help interpret and dissemination study findings

When: Group meets twice a year, and will run to 30 October 2020

Expenses: Travel expenses will be covered

More Info: Contact Daniela Strelchuk daniela.strelchuk@bristol.ac.uk for more info or to apply. You can read more in the study abstract

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