Patient insight partner group
Our focus is to put people with arthritis at the heart of everything we do and ensure our decisions are guided by their perspective. This includes listening to and involving them in all aspects of our work. The perspective of people living with arthritis is key to ensuring that the research we fund is relevant, accessible and sensitive."I appreciate the way the charity encourages “patients first” and I believe that the way that patient insight partners contribute is inspirational" Maureen Grossman, patient insight partner.
We're one of the leading medical research charities in incorporating routine public and patient involvement into the research funding decision-making process, initially in the form of the USER stakeholder committee, which was established in 2008.
In line with our current strategic focus, we have innovated new ways of involving the patient voice, building on the previous success of USER.
The patient voice is integrated fully into all of our research activities through close collaboration with our patient insight partners. This group work alongside researchers and health care professionals to ensure relevance whilst maintaining our high standards of research quality.
We collaborate with our patient insight partners on a number of activities including:
- setting research priorities
- supporting researchers to undertake effective public and patient involvement
- reviewing research proposals
- monitoring and providing ongoing input into funded research
- evaluating and disseminating outcomes of research.
To find out more about becoming a patient insight partner, please contact us at firstname.lastname@example.org.
Becoming a patient insight partner
Our patient insight partners contribute to our research funding decision making activities in many ways, including:
- The review and evaluation of research applications (at panel meetings and/or at home)
- setting research priorities
- evaluating and disseminating research outcomes such as the work of our centres of excellence.
Maureen Grossman, one of our patient insight partners, comments: "I'm asked to take part in a range of activities, such as visiting centres of excellence, commenting on products designed to make life easier for patients, lobbying my MP, working with European partners in osteoarthritis research and co-delivering workshops to help scientists involve patients in their activities."
As our patient insight partner group continues to grow in its volume and diversity, we welcome enquiries from people with experience of arthritis in any of its forms (whether that be patient, or carer, family or friend of someone with arthritis) and an interest or experience in health-related issues and/or medical research.
We would love to hear from anyone who:
- Enjoys communicating with a variety of different people
- would like to use their lived experience of musculoskeletal conditions to improve research
- is happy to constructively critique research in order to ensure that the patient is kept at the heart of the project.
The process of becoming a patient insight partner involves submitting an application and attending an interview. Interviews can take place in a variety of locations across the country (subject to requirement) or via Skype.
To find out more about how to apply, contact the research involvement team on email@example.com
One of our key principles around involving people with arthritis in our research activities is to ensure that they feel supported. To ensure that our patient insight partners have the tools available to undertake the tasks we ask of them, we've developed a series of resources and pulled together a list of helpful reference documents and web links.
We know that research applications aren’t always written in accessible language so we’ve put together a glossary of terms (PDF 433 KB) to support people when reviewing and evaluating applications.
NIHR patient and public involvement learning zone
The National Institute for Health Research (NIHR) have developed a learning zone with a variety of resources for patient and public involvement (and engagement) including online courses and information around involvement in clinical trials.
INVOLVE is the national advisory group for public involvement in research in the UK. The INVOLVE website includes many resources for researchers and members of the public around health and social care research, including involvement cost calculators and training for the public
We know that if you are considering applying to become a patient insight partner (PIP), you might have some questions. Below are some of the key questions that our PIPs told us they had before, during and after the volunteer recruitment process.
Q: What’s the application and interview process to become a patient insight partner?
A: We currently have a two-stage application process, whereby we ask that prospective PIPs submit an application form and CV, followed by an informal interview with the research involvement team and a current PIP. Interviews are scheduled across a wide geographical area to ensure that they’re as accessible as possible.
Q. What skills and experience do you need to become a patient insight partner?
A. Patient insight partners bring a variety of skills, including excellent communication skills (written and verbal), tact in critiquing the work of researchers, and a willingness to challenge conventional thinking. Ultimately PIPs all have one thing: experience and insight of day-to-day life with a musculoskeletal condition.
Q. Is there any training provided?
A: Yes, we provide all PIPs with an induction which incorporates some ‘on the job’ training, as well as continuous training at patient insight days throughout the year. We also have a resource pack that all PIPs can reference while undertaking the role.
Q. What kind of activities might I be asked to do?
A. Within research, we have a wide variety of projects all of which we aim to involve PIPs in. Traditional activities are based around review and evaluation of research applications (written and panel reviews), but we also invite PIPs to contribute to priority setting activities, monitoring of our centres of excellence, and other projects such as reviewing of new product ideas in the Design Council Spark awards. We also work closely with other parts of the charity to give PIPs the opportunity to contribute to other work outside of research.
Q. Are there any expected minimum commitments in terms of time and duties?
A. It is up to you to decide how much (or how little) time you would like to contribute. We advertise opportunities as they come up (a couple of times every month) and ask PIPs to give us their preference of what they would like to do. We do however, appreciate that everyone has other commitments in life, and advocate that PIPs respond with a ‘no’ when they need to. As a minimum, we ask that any new PIPs attend a one-day (10am to 3pm) induction. Patient insight days take place approximately three times a year and we would actively encourage PIPs to attend at least one of these.
Q. Are health conditions accommodated for and how do these impact on the role?
A. Any activities that PIPs undertake in the role will be sensitive to all long-term health conditions, including arthritis. Meetings are designed around good musculoskeletal health, and much thought is put into accessibility and the needs of PIPs. For PIPs who are unable to travel for any reason, we offer activities which can be undertaken at home or set up teleconference capabilities where appropriate. During all-day meetings, adequate breaks are factored in, as well as timings that allow PIPs to travel outside of peak times.
Q. Is this a paid role and will volunteering cost me anything?
A. This is a voluntary role and therefore unpaid. However, volunteering shouldn’t cost you anything. We can happily arrange travel and accommodation beforehand, ensuring that PIPs aren’t out-of-pocket for any events that they attend. Expenses incurred whilst carrying out the role are reimbursed (standard-class travel, mileage, overnight stays as agreed).
Are you interested in becoming a patient insight partner but want to know more about what it's really like? Do you have a burning question that you can't find the answer to on our web pages? Contact the research involvement team on firstname.lastname@example.org.