Tag Archives: health

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

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Wayne Jepson reflects on our work and being a member of our Advisory Panel

This is the final video in a series of three that we conducted with Participation Cymru Advisory Panel members, following previous interviews with both Derek Walker of the Wales Co-operative Centre and Margaret Peters of the Countryside Council for Wales (which is now part of Natural Resources Wales). We filmed these as part of our Evaluation Framework, which helps us to ensure that what we do is meeting the needs of people and organisations who access our services.

Wayne Jepson on Participation Cymru / Wayne Jepson ar Gyfranogaeth Cymru from Participation Cymru on Vimeo.

Wayne is a long serving member of the Advisory Panel. He has represented NLIAH (the National Leadership and Innovation Agency for Healthcare, which has now closed, with its functions transferred to the Welsh Government and NHS Wales) for a few years now, and he has been involved in commissioning work from us as a project as well as providing a steer for our work as a member of the Advisory Panel.

When I asked Wayne to tell me how he saw the role of Participation Cymru’s Advisory Panel he said “I think the Advisory Panel is a critical element of Patricipation Cymru’s development. I think it provides a forum to inform and influence decisions that are being made by Participation Cymru and about Participation Cymru and the wider public sector. For me, the Advisory Panel not only acts as a programme board might for a project, but it also is there as that check and balance for Participation Cymru. I think that because of the make-up of the Advisory Panel – people are from a range of different organisations and different sectors – it brings a wealth of experience and knowledge to the table that can only help Participation Cymru in developing and moving forward”.

One of the National Principles for Public Engagement in Wales is to “Work with relevant partner organisations”. NLIAH firmly put this into action in their role as an Advisory Panel member by commissioning training from us in partnership with the Welsh Local Government Association. This approach ensured the best possible use of resources, but also gave added value to the training as attendees were given the opportunity to network and to learn from each other’s experiences.

NLIAH produced a range of useful resources on improving health services, including really useful guidance on involving adult NHS service users and carers, which clearly shows that listening to the voice of patients and the public is vital in order to ensure the improvement of NHS services in Wales.

– Dyfrig