The Patient Reported Outcome Measures (PROMs) 2018 Conference brings together researchers, health care professionals, patients and carers at the University of Birmingham on 20th June 2018. The event is hosted by the Centre for Patient Reported Outcomes at the University of Birmingham.
We welcome everyone to this Conference and recognise that everyone can make unique and valid contributions. This includes people who are new to the area of PROMs or who perhaps haven’t attended a conference before.
In PROMs research, we already involve patients and members of the public in our research. The PROMS 2018 Conference is no exception and this is a ‘Patients Included’ event that has been designed and produced with patients, carers and the public. We will also have patients presenting at the event and contributing to our discussions on the four major themes of our Conference:
- Minimising PROs waste – in Research and beyond
- Pushing the boundaries of patient & public involvement in PROs research
- Digital capture of PROs
- Cutting-Edge methods
By including patients and the public at our event, we hope that we can build on the ways we already involve patients and the public in PROs research and we develop innovative and creative ways of involving patients to make PROs research even better.
Mel Calvert, Professor of Outcomes Methodology and Director of the University of Birmingham’s PROs research centre, CPROR, said:
“Everyone interested in Patient Reported Outcomes research has a shared goal: to enhance patient care and improve outcomes for patients by ensuring that the patient perspective is at the heart of health research and decision-making. For our research to be a success, we need to work in equal partnership with patients, and make effective use of their unique knowledge and experiences.”
'Patients Included'
We want to make sure that we do all we can to make our event as inclusive as possible. We have worked in partnership with patients and the public to design and plan our Conference. We want to make the most of this opportunity bringing people interested in PROMs research together and we want to make sure that the event is fruitful for everyone that attends.
We have taken the following steps to make sure that the PROMs 2018 Conference meets the ‘Patients Included’ standard:
- Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
Patients and public members from CPROR at University of Birmingham, together with the Patient and Public Involvement Lead from NIHR Collaborations for Leadership in Applied Health Research and Care West Midlands (CLAHRC WM), have contributed to the design of the Programme and planning of the event. This has included contributing in discussions on panel discussions and providing suggestions for suitable speakers.
Specific suggestions from patient/public contributors taken forward include:
- Inclusion of a panel discussion addressing Public Involvement in PROs research. ‘Pushing the Boundaries of patient and public involvement in PROs research’ is included on the Programme and will be led by Dr Kirstie Haywood, an expert in the field.
- A keynote speaker to provide a patient perspective. Dr Tessa Richards, senior editor at the BMJ and leader of the patient partnership initiative will deliver a keynote speech at the Conference emphasising the patient perspective.
- Award of a prize for the team/individual demonstrating the best PPI in PROs research. This was a suggestion from the patient/public contributors and it is hoped this will raise the profile of public involvement in PROs research.
- Patient/Public review of abstracts. Patient/public contributors will be involved in reviewing abstracts for the PROs Conference. Training/support will be provided for this activity if required.
- Patients or caregivers with experience of the issues addressed by the event participate[2] in its delivery, and appear in its physical audience.
Involving patients/caregivers throughout the event will enable us to have broader discussions on PROs research and help us identify and explore new directions for future research. It is also hoped that discussions may lead to future collaborations and opportunities for further involvement of patients/caregivers in PROs research.
Patients/caregivers will participate in the delivery of the research in addition to attending the conference. Specific examples of how patients are included in the event participation and delivery include:
- Keynote lecture by Tessa Richards, leader of the patient partnership initiative at the British Medical Journal, who will emphasise the patient perspective.
- Conference co-chaired by Gary Price, patient partner at University of Birmingham’s Centre for Patient Reported Outcomes Research (CPROR)
- Co-Presentation of research by patient/caregivers (this has been encouraged by the organisers).
- Patient/caregiver attendance and participation in panel/keynote discussions.
- Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships[3] are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
We want to remove barriers that may prevent people from attending the PROMs 2018 Conference. A number of bursaries to attend the Conference will be made available to patients/caregivers/members of the public.
Our patient/public partners have been involved in designing the process for applying for bursaries and will be involved in reviewing the applications. We have offered support to people who wish to apply for the bursaries if they would like assistance in completing the application.
Our patient/public partners have also been involved in helping to promote the bursaries and opportunities to attend the PROMs 2018 Conference.
Details about the bursaries we offer include:
- 5 bursaries are available for patients/caregivers/members of the public to attend the Conference.
- All travel/accommodation requirements for those awarded bursaries will be reimbursed in full, in advance of the conference by the conference organisers.
To apply for a bursary, we are asking people to complete an application form. The application form can be either completed online or downloaded.
- The disability requirements of participants are accommodated[4]. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
We have worked with our patient/public partners to ensure that the Conference is accessible to all. All elements of the Programme will be open to all delegates.
Specific examples of how we have made the Conference accessible include:
- Selecting a suitable venue. The PROMs 2018 Conference is located on the ground floor. All rooms for keynote, plenary and break-out sessions are fully accessible. The venue has parking for visitors with Blue Badges. Conference materials will be available in large print on request.
- Provision of clear information about the event. We will be sending clear joining instructions prior to the event, which includes information about the venue, the Programme, and how to get the most out of the day. Contact details will be provided by the Organisers if people have any specific questions/requirements.
- Consideration will be given to those with mobility issues. This includes ensuring seating is available for lunch/poster viewing.
- Provision of an ‘Ask Me’ stand. This will be staffed throughout the day to address any specific needs/requirements on the day.
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Access for virtual participants is facilitated,[5] with free streaming video provided online wherever possible.
- Throughout the event day, we will maintain live updates via Twitter using #PROMS2018. We will also be using the #PatientsIncluded. This will enable people unable to attend the event to follow the highlights of the Conference.
- With agreement from the Plenary Speakers, presentations will be made available as PDFs after the conference. These will be posted onto the Conference website.