Thursday, August 7, 2014

International Patient and Family Centred Care Conference #3

Three people were on the panel: Debbie Higgins parent Chair of Advisory Council, Audrey Davis Past Chair of Family Advisory Council and Alicia Huettel Family Centred Care Co-ordiantor

Pioneering research for children with Cancer and other catastrophic diseases
There are currently 2,500 active patients at St Jude’s and they want feedback from as many patients as possible. They want to include diversity by diagnosis, treatment status and locality. They are also keen to develop a variety of ways for patients and families to share experiences, offer input into policies, projects and collaborations. 

St Jude covers transport costs for people to come to the hospital to attend Family Advisory Committee meetings. In times where there is increasing pressure on hospital budgets the E-Council is an efficient and easy way to get more real time experiences at reduced cost.

The Quality of Life Steering Council oversaw the establishment of the E-Council. They formed Parent Manger roles and there are six people who participate in this way. Sub groups by diagnosis and in October they are planning to launch Spanish speaking site.

They provide lots of useful questions for you to answer in considering if this is the right approach for your organisation: What is the hospitals culture and experience of social media? St Jude’s is very cautious about Facebook and Twitter and can be described as risk averse and wanted to use a website rather than social media. Is there ease of maintenance and supervision and what reporting was offered? Also wanted to consider options for discussions and sharing, such as file sharing and discussions groups. Need to think about the information shared and how to receive feedback. And sharing personal health information is a significant issue and o sigh is completely safe but does it meet the requirements of the legislation and hospital policies? And security and visibility to the outside world? How will information be safeguarded?

Any engagement with patients involves a cost in dollars and time. You need to think about this. And what at the limitations of the platform? What are you prepared to compromise on?
Application and orientation is important to so that people are clear of expectations. There is a one page applications that sets out role description and site guidelines, rules for participation, hat is acceptable posting and process for removal.

Offer a more formal PFCC role to all patient families. Obtain broad responses for developing programs and processes, They have department specific surveys as well as more general surveys. And they are using survey monkey for this.  They survey on things like food, nursing bedside reporting, new patient room furnishings, patient snack bag options. And also to look at the demographics of the membership of the E-Council.

Recruitment. They have 70 – 100 members. And there is an application form but membership is self-selected.  They are looking to increase their numbers. They have invited all their family centred care programs including family advisory council, parent mentoring program, quality of life steering council and family resource centre. They also use pharmacy and social work and volunteer services to promote the E-Council. They have recruiting fairs and promote this in the reception areas, housing and public areas as well as the St Jude’s newsletter. They want families in active care, after care and those survivors as well as people in bereavement. They also want the E-Council to reflect the demographics of their patient community.

Recruitment and engagement of members Is key. It is important to stay true to the purpose of the group it is not a facilitated support group, it is not for medical advice and also ot for advocacy. They note that there is a need for additional language. Spanish will be introduced as this is the second most common language spoken.

They are very keen to see members of the E-Council become members of the Family Advisory Council (FAC) as well but recognise that travel to Memphis for the month face to face meeting is not always possible for people. Distance and time commitment are really issues that prevent people from engagement in the Family Advisory Council.

The FAC has skill sets and time commitments that means that there is a selection process. So some people may not be the right fit for the FAC so they are encouraged to join the E-Council.
So people log into the site and it is private, members only. People cannot leave anonymous feedback in the current system.

Engagement survey – to find out more about the group members and identify their needs and interest. This is important also to improve the sites design and functionality. They asked questions about navigation of the site, relevance of discussion questions to their personal experiences, receiving feedback, subgroups smaller discussion groups, and interest in expert-led discussions groups. They will share the survey and the result on their website if you are interested in this.

Experiences survey to assess the diversity of members and their treatment status as well a experience with clinics services and departments.

So, if you are considering developing a Council...

They suggest you need to think about the following things -

What are you looking to achieve, consensus view or a variety of views> what is the level of influence they will have and how will this be fed into the leadership of the service? How can members submit ideas? How to prioritise and coordinate your surveys? What are you doing to ensure that the E-Council has the skills to meaningfully participate? Is there a leadership structure similar to face to face Advisory Councils? What is the process for selecting these people? Are there specific skill sets and experiences you want to target? And will you have criterial for exclusion? And what about the level of participation? How do you manage the tension between providing flexible engagement and demanding too much? And how will yu address negative comments? Who moderates the group? How do you manage emotional responses?

They use Group site ( and there is a modest monthly cost.

Darlene Cox

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