Special Interest Groups (SIG) and Patient Experiences

A Special Interest Group (SIG) is essentially a community of people from a wide range of backgrounds  and perspectives who have a common goal. They interact together to share experiences, advance knowledge and learn from each other- so that all members of that community come to recognise and understand each other's needs, values and ambitions.

In healthcare, the perspective of both public and patient voices are essential to develop, refine and embed the full range of care within the health sector.  And fortunately, the awareness of these voices as a fundamental component of co-design and co-production is widely accepted.

The environment for an online perioperative health SIG, where patients, clinicians and allied professionals can gather and interact, allows for an inclusive, diverse and informed group to discuss all aspects of a patients journey from diagnose, through any treatment options and via discharge, back into the community.

So, what impact can a patient voice make within a SIG?

There is no single formula for co-production in a SIG, although there are some features that point to a successful collaboration:

• It engenders an attitude of mind for those who contribute, that those who access care have a valuable contribution to make due to their first-hand lived experiences. And that those experiences are valued and welcome.
• It breaks down established barriers between people who draw on care and those who support and provide that care.
• It can provide a momentum for change for patients from having an online presence of 'being involved', to having an equal and empowered role within a healthcare system.

Taken together, these allow a developing interconnectedness to develop as participants build relationship, trust and shared understanding.

Can this voice expect to make a positive difference?

My experience of being involved in Patient Public Involvement (PPI) over a number of years has convinced me that not only can an on-line presence make a difference but that the patient voice can be magnified and therefore be raised to a volume that others can hear!

The key, in many ways is to have meaningful engagement with a wide range of people from a diverse background.  These could be members of a defined people group whose cultural background is often not represented or those who may have differing levels of health literacy and understanding of health matters. An online presence allows many people to articulate their experiences in a real and often profound way - that can lead to an increased impact that a normal face to face meeting couldn't accomplish.

Let me give you an example to illustrate this:

A patient with a recently diagnosed prostate cancer contributed to an online forum consisting of patients and healthcare professionals to explain their experience in a local hospital. They had recognised that following diagnosis, their next 7-10 days had consisted of supporting family members and trying to meet everybody's expectations, except their own. At the end of this period, they felt unsupported, exhausted and low in mood.

The replies from the health professionals on the forum acknowledged the problem in a supportive and positive way. A telephone call was received by the patient to further understand the impact that this had on the patients initial mental health following diagnosis. The feedback from this led to changes in the information that future patients received, with each new cancer patient being made aware of the possibility that they may need to meet others expectations on their diagnosis of cancer. There was also a leaflet produced, co-designed with the patient, and a process where newly diagnosed patients were contacted a week following consultations, from a named person, to review that patient.

Whilst recognising that this is a remarkable outcome in this instance, it helpfully shows the value of an online forum, a patients contribution, a responsive healthcare service and a willingness to aid change and improve care.

How can the Q Perioperative Care-Prehabilitation SIG make a difference?

The Centre for Perioperative Care (CPOC), in partnership with Macmillan Cancer Support have launched the Perioperative Care - Prehabilitation SIG on the Q Platform. 

Supporting change is often a slow, long process. Those changes can sometimes seem like a red/amber/green activity - stop, it's not going to happen, hold on a little and it may take place - but rarely - green light, let's get this done.

Bringing together public, patients, charities and members of the healthcare team allows for a sharing of knowledge and information. It allows 'hot topics' to be discussed and debated from differing vantage points. There are opportunities to share emerging research themes and look at embedding exemplars of good practice more widely. These are some of the 'green' lights that are possible as we collaborate together in a SIG.

The Q Perioperative Care - Prehabilitation SIG, hosted by Macmillan Cancer Support and CPOC,  provides a platform to enhance the patient voice at a time where collaborative working can make a real and significant impact in healthcare, both in the UK and to a wider world audience.

If you are interested in joining the SIG please visit the Q website.  If you are not a Q member, please note you will be asked to create a guest account.