This section covers the process for writing medical guidelines in greater depth. It largely follows NICE’s principles as these have been rigorously developed to ensure medical guidelines are credible and accurate. However, it is not necessary or always practical to follow them word-for-word, so your team should decide the most appropriate process for yourselves.
Is developing a medical guideline a priority?
Before you start your medical guideline project, you should discuss with your trustees and medical advisors whether a medical guideline is right for your patient group at this moment in time. Writing a medical guideline is a considerable undertaking and you shouldn’t start a guideline project without the time, money and resources needed. Consider:
- Is writing a medical guideline within your remit? Does it fit within your vision, mission and aims?
- How will a medical guideline benefit patients?
- How long will the project take? (the NICE process takes 12-27 months) How much will the project cost?
- Does the benefit to patients outweigh the time and money needed?
- Do you have the human resources (e.g. sufficient knowledge and expertise) in your group to write a medical guideline? Will the people with expertise be present throughout the whole process?
- Could a less resource-intensive project achieve the same benefit to patients?
If you agree that writing a medical guideline will significantly benefit patients and you have the appropriate time, money and human resources to complete it, then you should build a committee around the project. Read the next guide to find out more.
Forming a committee
If you agree that writing a medical guideline will significantly benefit patients and you have the appropriate time, money and human resources to complete it, then you should build a Guideline Committee (also known as a Decision-making Committee) around the project.
You should aim to get a range of expertise and guideline users on your committee, such as medical specialists, medical generalists, service providers, academics, patients/families, and commissioners.
Ask your scientific advisory committee
A good place to start is asking your Scientific Advisory Committee (or Medical Advisory Board) for their commitment to this project. They have the expertise needed to gather scientific evidence and make recommendations.
When approaching your Scientific Advisory Committee for this project, you should clearly communicate its aims and what will be expected from them in terms of both time and knowledge. Let them know how many meetings they’ll be expected to join, how much of their own time they might need to put into it, and how they will be reimbursed for their time (if at all). Communicating this before your team commits to the project will mean they will be less likely to leave the project at a later date.
If you do not have a Scientific Advisory Committee, check out our guide on how you can form one here.
Ask your wider scientific community
Medical specialists who are not on your Scientific Advisory Committee can participate as Guideline Committee members. The committee can include those who are specialists in your disease as a whole and specialists in its separate symptom areas. Similarly, you should communicate the aims of the project and what is expected from them clearly.
Ask your patient advisory committee
Patients and carers have an important role to play in developing medical guidelines:
- Patients and carers are experts in the impact of the condition on daily life and the realities of current medical practice. Their knowledge can be used to inform recommendations, such as those on referral pathways, how tests are carried out, and when emotional/lifestyle support should be offered.
- Having patients on a committee can help to make sure the written recommendations are accessible. Sometimes patients have to advocate for themselves in appointments with healthcare professionals, and understanding the guidelines can give them the information and power they need.
- It can be easy for the scientific community to become disconnected from the patients they are helping. Having patients/carers involved in the guideline process provides an opportunity for your scientific members to meet patients and become motivated by their stories.
If you do not have a Patient Advisory Committee to approach, you can ask your wider patient community to get involved. You can also find out how to form a Patient Advisory Committee in our building a team guide–> Check this/ link this
It is up to the core committee members to decide how roles should be assigned. You may want to have a smaller committee to build the initial framework for the guidelines, and then expand it to a larger committee once you know which topics you intend to cover.
If you have exhausted your existing community and there are still roles to fill – e.g. specialists in literature reviews – it might be worth approaching a medical consultancy. Feel free to get in touch with the Findacure team for recommendations of medical consultancies.