Lucy, Jon, Tom, and Binish
are planning health care research projects.
They know that patient and public involvement
also known as PPI has a positive effect
on research quality and end-results.
They want to hear views from PPI on their
research topics and planned methods,
but are not sure how and where to find the right people.
Lucy decided to approach an existing patient support
group in her local community
relating to her research topic.
She thinks that patients in the group will
know a lot about their health condition
and can help her to identify gaps in her knowledge.
Lucy searches online for the relevant patient support
groups and contacts the group leads for help.
She briefly explains her research topic in an email
and asks to meet the groups
to discuss her proposed project.
Lucy is able to meet them in their own setting
to ensure comfort.
Participants are likely to be familiar with each other
so they may be more willing to share their experiences.
They may not require reimbursement
for travel expenses or time.
It may be difficult to find a patient support group that
relates to her research topic.
Lucy needed to have good facilitation
and note taking skills to record the discussion.
She also needed to be flexible
when arranging meeting times and dates.
Jon was not able to find a local patient support group
like Lucy and decided to form a new PPI advisory group.
He wanted to find people that had experience in
the topic he is researching
so they could provide valuable PPI insight.
He created a recruitment flyer
and advertised it via email to existing PPI groups
at the University, local hospitals and GP practices.
Jon could also post it on social media
or advertise it via third sector
organisations like charities.
Interested people then contacted Jon
for more information.
PPI members became part of the research team,
met regularly, and were invested in Jon’s project.
Jon could also measure the impact of PPI
and found it easy to provide feedback
to group members.
Jon needed funding for travel expenses,
venue, refreshments, and PPI reimbursement.
It took time to form the group
and organise the meetings.
Jon also needed to think about training
for the group members.
Tom works at the local Hospital Trust
and decided to access an existing PPI
group at the hospital.
His aim was to gather their opinions to help him
to define his research question.
Tom had to gain a local Trust approval
and with the help of the Trust’s Research and
Development team was able to share a flyer with
existing hospital PPI members.
Panel members were experienced in research
and familiar with the PPI role.
Tom also didn't need to get funds for meeting venue
or expenses as this has already been
covered by the Trust.
This approach was for staff members at the Trust.
Tom had to work closely with the Trust’s research
coordinator which may add
additional time to the process.
Binish wants to form a group specifically to review
online documents like surveys.
Like Jon, Binish created a recruitment flyer
and shared it with various groups.
Members needed to have computer access
to communicate electronically
as there was no face-to-face meeting.
No funding was required for meeting
venue and refreshments.
Binish found that she was able to engage with
hard-to-reach individuals such as housebound patients.
This was an anonymous process
which she believed encouraged PPI members to
express honest views.
Binish’s prepared documents needed to be compatible
with various devices and software packages.
There was limited opportunity to correct any
misunderstandings as all communication was via email.
She also felt that this approach excluded people
who could not use digital technology.
All four found that engaging with PPI had a
positive effect on their projects’ progression
and their own personal development.
Lucy, Jon, Tom, and Binish would
encourage all researchers to work with PPI.