This section highlights the importance of collaborative interactions between patient groups and medical professionals, to work together to achieve a common goal. Some examples of how this can be done, through advisory panels and committees, scientific articles/specialist meetings, and family days/patient events, will be shared.

Identifying and Connecting with Medical Professionals

In order to begin a collaborative relationship, patient groups may first need to connect with relevant medical professionals, if these relationships don’t already exist. There are several ways to reach out to and network with medical professionals:

  • Attendance at specialist conferences or meetings for your rare disease area can help you identify and network with professionals who work in the field.
  • Reaching out to genetic councillors and consultants, especially those who work with patients in your community, is a great way to connect with professionals who have an interest in your rare disease.
  • Reaching out to specialist rare disease centres or clinics, such as those located at Birmingham Women’s and Children’s Hospital, Guy’s and St Thomas’ Hospital London and the Manchester Centre for Genomic Medicine, can help you identify rare disease specialists who may be interested in collaboration. When reaching out to a potential collaborator, it is recommended that you have a clear plan for the activities you will take on together, so you can ensure your priorities and interests match, to be open about what you are trying to achieve.

Top tips for identifying and contacting HCP's

Do not worry if this is your first experience of collaborating with medical professionals! Try the following tips when identifying and contacting a medical professional for the first time:

  • Search online for specialist conferences or meetings that you can attend and network at, using key words such as your disease area and ‘conference’ or ‘meeting’.
  • Search online or on LinkedIn for the contact details of any medical professionals you want to reach out to.
  • Send short and concise emails so that the medical professional has time to read it; if they are interested, you can send them more information in your next email.

Have a clear idea of your aims so medical professionals you contact understand why you want to collaborate.

Collaborating on Advisory Panels and Committess 

An advisory board is a group of experts that provides advice, important insights and recommendations to a charity or company. Medical and scientific advisory boards can be very valuable to a patient group; patients and patient groups may be experts on the day-to-day impact of a condition but may not be so knowledgeable about the latest scientific advances and treatments for a condition. Therefore, gathering expert insight into these topics through a medical or scientific advisory board can be very valuable to a patient group and feed into plans for future projects.

Ataxia UK is a great example of a charity which has built both a Scientific Advisory Committee (SAC) and a Medical Advisory Panel (MAP); these perform different roles for the charity, allowing them to get expert advice on their research strategy, and to gather scientific and medical knowledge.

Tips for setting up an advisory board

If this is your first time setting up an advisory board, do not worry about setting up a SAC and a MAP! You may want to focus on running a basic, one-off advisory board consisting of a few medical professionals who can provide scientific advice or expertise to your patient group, for example regarding recent advances in research and medical treatments.

Scientific Advisory Committee

The main purpose of a SAC is to gather expert advice on a charity’s research strategy and projects. This is useful for:

  • Ensuring funds raised by the charity for research will be spent as effectively as possible, e.g. through recommendations as to how money is allocated.
  • Generating new ideas and expanding the charity’s network of researchers helping to raise the profile of the charity as a legitimate partner for research.
  • Monitoring ongoing projects and reviewing applications and proposals for research funding

When setting up a SAC, it may be useful to discuss how the committee will function, including:

  • How many times the committee will meet throughout the year.
  • What the roles of each scientific member will be.
  • The review processes for each member.

You may want to document this information in a terms of reference document, outlining a full list of the members of the committee, details on the roles and expectations, and any confidentiality and conflict of interest policies. More information on terms of reference documents can be found in the ‘Patient Group and Charity Collaborations’ guide.

As for many rare diseases, there are often only a small number of researchers in a country who focus on the condition. If only these researchers are invited to a SAC this could lead to conflicts of interest, e.g. when applying for funding. It is therefore recommended that you try to include other researchers, who have a general interest in the disease area you work in (e.g. broader knowledge of metabolic disorders, neurological conditions etc.) but aren’t specialists in your condition of interest. You might also want to consider inviting people with more general expertise, e.g. in statistics or clinical trial design, to ensure a broad range of viewpoints are shared.

Case Study: Ataxia UK SAC

  • The primary purpose of the Ataxia UK SAC is to advise on research grant applications and Ataxia UK-funded projects.
  • The SAC is made up of six scientists, one trustee advisor and three lay members. Members of Ataxia UK help facilitate and provide Ataxia UK’s perspective, however they do not comment on the scientific discussion or the decisions made.
  • Being a member of the SAC requires an ongoing time commitment; as well as attending the meetings, the scientists are expected to review and present papers close to their area of interest for each meeting.

The main challenge that the Ataxia UK SAC has encountered is building a committee with appropriate and varied expertise.

Medical Advisory Panel

The main purpose of a MAP is to support the work of a charity or patient group, by giving scientific and clinical advice. This may involve:

  • Responding to medical questions from patients.
  • Producing medical guidelines.
  • Advising the patient group on medical issues.
  • Helping with policy statements and information leaflets.

A MAP is usually made up of medical professionals and specialists on a specific rare disease. Different types of medical professionals should be included to make sure the range of clinicians and specialists that patients will meet during their care and treatment are represented. If the condition is extremely rare and there are few specialist medical professionals, you might want to consider inviting anyone with an interest or expertise in a similar field or in one of the symptoms of the condition.

As medical professionals have very limited free time, the workload must be spread evenly between those involved by keeping track of tasks and how often they are participating in a meeting or project. When setting up a MAP, it may therefore be useful to discuss how the panel will function and set this out in a terms of reference document. More information on terms of reference documents can be found in the ‘Patient Group and Charity Collaborations’ guide.

Case Study: Ataxia UK MAP

The Ataxia UK MAP is made up of both professionals who work with patients with ataxia, and lay members:

  • A trustee, who chairs the panel and three lay members.
  • Neurologists with interests in ataxia.
  • A clinical geneticist specialising in ataxia.
  • Specialist nurses.
  • Speech and language therapists.

A couple of members from the Ataxia UK team also attend to help facilitate and provide Ataxia UK’s perspective.

Before the MAP was set up, many of the medical professionals were already advising Ataxia UK. Forming the MAP was a way to gather opinions and advice under a more formal agreement.

There are a number of expectations of the members of the MAP:

  • Joining annual in-person meetings; these were changed to shorter, more regular virtual meetings due to COVID-19.
  • Providing regular help with reviewing literature.
  • Answering no more than one medical query per person per month, with a response expected within two weeks.

Recent activities the MAP has taken part in include:

  • Engagement with other clinicians.
  • Hearing updates on best practice in ataxia treatment.
  • Discussion of research projects, updated policy statements and information leaflets.
  • Attendance of annual and regional patient conferences to take part in Doctor Q&A sessions.

Development of medical guidelines.