The Swiss Clinical Trial Organisation (SCTO) and its Clinical Trial Unit (CTU) Network are strongly
committed to clinical research being patient relevant. This patient relevance
is anchored in the SCTO’s vision and mission
statements,
and many of our past activities reflect this commitment. The SCTO is one of the
founding members of Switzerland’s European Patients’ Academy on Therapeutic
Innovation (EUPATI
CH) and
has run the association’s secretariat on an in-kind basis since its inception.
Patient and public involvement as a strategic
goal for the next four years
In the SCTO’s new 2021–2024 performance period,
even greater emphasis will be placed on implementing patient and public
involvement (PPI) in academic clinical
research as one of our key strategic goals. There is no denying the fact that
patients can offer a unique perspective on clinical research.1,2 Through their experience with a disease or condition, patients know best which
aspects are most relevant to them. By sharing this specific knowledge, they
contribute to the quality, feasibility, relevance, and credibility of clinical
research. Along with other important benefits, this can improve a clinical
trial’s recruitment rate and potentially patient retention and thus enhance the
success of a trial. From an ethical point of view, one can argue that patients
should have an influence on research that affects them, in line with the motto
“nothing about us without us” (see the SCTO’s PPI Factsheet and PPI Guide for Researchers for more PPI
information).
Current PPI situation in Switzerland
In reality, the practical application of PPI in
academic clinical research is lagging behind in Switzerland when compared to
other European countries such as the UK or the Netherlands.
Some initiatives exist that have been put in place
by single organisations, but they more or less stand alone and are not
connected. Yet they face similar problems and need to address comparable
challenges. And above all, they rely on the same “resource”: patient and public
representatives who are willing to contribute and actively engage in PPI.
Because the PPI approach is relatively new, trained and empowered patients who
are able to make a more informed contribution are still a scarce resource in Switzerland.
In addition, transparent compensation models for patients’ contributions are
often missing or insufficiently established due to a lack of funding. This does
not support sustainable PPI implementation in the long run.
The SCTO is therefore advocating for a more
holistic, adequately funded, and coordinated PPI approach that includes
different organisations and stakeholders and pursues the following objectives:
- build
and leverage available resources
- use
synergies where possible
- raise
awareness of the concept of PPI
- implement
the principles of PPI and realise its benefits in the most efficient and
sustainable manner possible
- raise
the visibility of clinical research and its significance for public health
- establish
the trust and mutual confidence between patients/the public and the research
community needed to lead to a true partner relationship.
In our endeavours to foster the implementation of
PPI in academic clinical research, the SCTO is taking a stepwise approach and
including all relevant and interested stakeholders as we go along.
First step: A mapping exercise
As the first step, a multistakeholder working group
was established in December 2020. This group developed and sent out a survey to identify and
characterise all PPI initiatives and projects in Switzerland with the aim of
defining the status quo. The initial results of the survey are currently being
analysed and will be summarised and published on the SCTO’s website at the beginning
of next year.
Second step: Establish a Swiss PPI hub
As a second step, the SCTO envisions establishing a
central coordination and contact point that is pathology-independent and spans
organisations (working title: Swiss PPI Hub). The conceptional framework for
this Swiss PPI Hub will be built upon the results of the mapping exercise
performed in the first step with the objective of bringing all relevant and
interested stakeholders on board. Preliminary reflections on how the potential
Swiss PPI Hub could be set up are depicted in Figure
1.
A central element would be a Patient Advisory Panel (PAP)
consisting of a limited but diverse number of patient representatives whose
main task would be to advise the hubs’ members and function as a think tank.
Membership in the hub would be inclusive and open to all Swiss academic
research organisations/institutions, funding bodies, and authorities with a
mandate in clinical research. Specific tasks and activities, such as drafting
best practice guidance or establishing a network pool of PPI contributors,
could be performed in work packages and thereby co-developed by both patients
(from the PAP) and hub members. The whole hub would be embedded in an
appropriate governance structure, and its activities would be coordinated by an
administrative secretariat or liaison body.
Still a way to go …
The SCTO and its CTU Network have started the
process of making PPI a sustainable reality in academic clinical research in
Switzerland. However, sustainable PPI cannot be achieved overnight – but rather
in the long run and only in close collaboration with our partners and
stakeholders. So join us as we walk the talk and run towards our goal of
embedding PPI in Swiss academic clinical research!
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