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Taking patient and public involvement online

Date: 01 November 2016

The Cicely Saunders Institute recently launched their Public Involvement Forum for research in palliative care and rehabilitation.

Patient and public involvement (PPI) is becoming increasingly recognised as crucial throughout the research process. However, collaboration through face-to-face methods is not always possible for those who would like to be involved and to contribute to PPI.

In response to this challenge, the Cicely Saunders Institute, based at King’s College Hospital in South London, has recently developed an online Public Involvement Forum:, in collaboration with their existing patient and public involvement members. It is the first of its kind in palliative care and rehabilitation research. 

Gerry Bennison describes his involvement with Cicely Saunders Institute PPI as “an egalitarian experience.” He continued: “I’ve done some PPI in the past but with the Cicely Saunders Institute, there was more essence of humanity and inclusivity. There was an informality from the team and they didn’t get inhibited by their own professional standing.” 

A recent piece of research Gerry has been involved in is called ‘Transforming end of life care’ and aims to improve education and training in end of life care and communication skills for staff who are not palliative care specialists. It was led by Dr Lucy Selman and Dr Jonathan Koffman, who felt the PPI group helped by contributing real life experiences, by refining the research guides for the focus groups and by flagging potential ethical concerns. 

From the work that was done on the ‘Transforming end of life care’ research, a new study called ‘Difficult Conversations’ was devised. This is also led by Dr Koffman and the same PPI group is being used. The PPI group have already made the researchers rethink important questions about how cultural differences may influence ideas on compassion, as well as the importance of being clear about time commitments for patients and families. 

Perhaps one of the reasons the ‘Difficult Conversations’ study has already brought up fresh points for consideration is that it uses the Cicely Saunders Institute’s new online Public Involvement Forum. Gerry feels the forum helps the PPI discussion: “I think you’re more able to construct a response and compose and construct a salient argument. It also enables you to share without the intensity of face-to-face discussion because it’s a challenging and sensitive area; you can have complicated discussions online without the heatedness sometimes involved.” 

The forum won an award at the recent ‘Know your CLAHRC’ event for most innovative patient and public involvement (pictured - credit: David Tett), and aims to enable more patients, families, and members of the public to collaborate with researchers and shape palliative care and rehabilitation research. Sophie Pask, one of the forum administrators, feels: ““It is not always possible for people who are unwell, who have caring or work commitments, or who live further afield to come to our face-to-face workshops. Plus, our current members really value involvement that can be flexible.”  

Sophie emphasized that there can be many pitfalls in doing PPI online as it’s open to misuse and may be unreliable, which is the reason the Cicely Saunders Institute forum started with a core PPI group who knew each other in person before they began using the online facility. Sophie and her colleagues also spoke to several people around the country who had set up online PPI groups to ask for advice on what to avoid so they could develop a forum with the best chance of succeeding.  

Gerry feels sure there are numerous benefits of the online forum the Cicely Saunders Institute has launched, including that: “research opportunities are available within the forum and to combine it with the discussion means there’s a real sense of moving forwards together, across studies. Also, a forum keeps everyone in the loop rather than disembodied emails to individuals. 

“I think it provides a sense of community rather than a disparate series of works. People can see the research as an integrated whole,” he said.

  • Summary:
    The Cicely Saunders Institute based at King's College Hospital, South London, recently launched their online Public Involvement Forum for research in palliative care and rehabilitation in collaboration with their existing patient and public involvement members. It is the first of its kind in the field.
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