Tag Archives: citizen voice

How patients and members of the public are involved in appraising new medicines

I recently attended a meeting of the Patient and Public Interest Group (PAPIG), which is made up of patients, carers, patient advocates and third sector organisations. The group feeds their views via the All Wales Therapeutics and Toxicology Group (AWTTC), who provide professional, technical and administrative support to the All Wales Medicines Strategy Group (AWMSG). One of the roles of AWMSG is to advise Welsh Government whether new medicines should be available for use in NHS Wales.

New medicines are evaluated against currently available medicines to compare:

  • how well they work,
  • how cost-effective they are,
  • which patients they would benefit the most.

AWMSG is committed to involving patients, carers and members of the public when evaluating new medicines. During the appraisal process, the patient and carer view is critical because clinical data alone can’t quantify a patient experience – the patient needn’t be an expert in medicine in order to be involved in this process. Most of the questions asked of them during the appraisal process are related to their condition and how it affects their day to day life.

The patients and carers who contribute may not be scientifically or clinically trained, but they certainly hold invaluable knowledge about the impact that their condition has on their and their families’ lives. Other stakeholders such as pharmacists, academics, clinicians and industry representatives are also involved throughout the process. The patients and members of the public are found through patient advocates and third sector organisations that are represented on Patient and Public Interest Group. AWTTC also search for other patient groups in order to reach those who are not currently engaged in this process.

It’s worth noting that other bodies in the UK who appraise new medicines do not take responses from individual patients or members of the public, but AWMSG do.

Patients and members of the public who are involved are known as lay-members. The dictionary definition of a lay-member is “A person who does not have specialised or professional knowledge of a subject.”  So if this is what a lay-member doesn’t have, what about the skills that they do have?

At the meeting, we completed a participatory exercise to examine ‘what skills, experience, qualities and attributes does a lay member have?’

Here’s some of what we came up with:

What does a patient representative look like? Skills and experience

  • Getting the point across
  • Analytical ability
  • Good communicator
  • Good understanding and experience of health conditions
  • Good listener

Qualities and attributes

  • Confident
  • Sympathetic / empathetic
  • Caring
  • Being able to stay within their remit

Completing this visual exercise was very a thought-provoking and interesting way of looking at the lay-member role.

What participatory tools have you used to analyse the roles of citizens involved in your consultation process?

Sarah

Legislation

Participation Cymru recently attended a workshop at the Older People’s Commissioner for Wales offices (OPCW). The workshop looked at a range of scenarios that affect older people and how the new Social Services and Well Being (Wales) Bill would impact on their situation, would it make it better, worse or have no impact?

ImageThe majority of people at the workshop were in agreement that the new Bill was definitely well-intentioned but when you try to apply a piece of legislation like this one to someone’s life, it’s very difficult to see how exactly it will help them.

This Bill, like many others, is very long and the Explanatory Memorandum that accompanies it is even longer. In fact many people I’ve spoken with about it have said that it ‘weighed them down’ (in more ways than one!). The workshop made me think about legislation in the wider sense and if law-making compares to citizen empowerment. Technically, it doesn’t.

So instead, is legislation there to protect people? In a sense: yes. The Social Services and Well-Being Bill aims to protect social service users and carers, ensuring that their needs are met and their voice is heard. Other pieces of legislation in Wales and the UK are also there to protect people, our property or possessions.Image

This leads to a philosophical question: do we need protection before we can feel empowered? Does this protection have to be legal? Or should we instead rely on the common sense of service providers to offer the required service no-matter-what, eliminating the need for a lengthy legal document?

No person who we’ve spoken to has ever said that what they really want or need is new piece of legislation”.

I completely agree – the people of Wales need access to good public services that meet their needs, they don’t need legislation to tell a service provider what they should be doing anyway.

A simple way of putting this point across is: The reason that I don’t go out tomorrow and rob a bank is because I think stealing is immoral and selfish, not because I want to avoid punishment or because there is a law that says I shouldn’t. I am empowered by my own decision.

–         Sarah