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2nd
IHA Patient Advocacy Workshop
3-4 June 2000, Guildford, UK
Contents
Learning from others' experience
Strategies for partnering with…
- medical professionals
- health funders
- industry
How to develop a business plan
Tips for establishing a not-for-profit organisation
Establishing
and maintaining a patient advocacy group
A
free practical resource from the 2nd IHA Patient Advocacy Workshop
The International Herpes Alliance (IHA) hosted its 2nd Patient Advocacy Workshop, 3-4 June, 2000, in Guildford, UK, aimed at those setting up patient advocacy and support efforts for people with genital herpes around the world.
This resource represents the more practical elements of the workshop, which can be used and downloaded free-of-charge by anyone wishing to establish their own patient outreach and advocacy programme. Each topic is designed to provide specific learning objectives, which are outlined at the beginning of each section.
A major focus of the workshop was to help develop business plans for the patient advocacy groups attending. The development of such business plans is considered so essential by the IHA that the primary aim of this document is to provide information to help achieve that end. A template for a business plan is also provided to help focus your thoughts and ideas.
Throughout this document, reference is made to patient 'support' and 'advocacy' initiatives. Patient support groups do much to inform and help the individual with genital herpes and can encourage people to seek advice from their doctor for diagnosis and treatment. Advocacy groups, however, have a much wider remit and can accomplish more in terms of fighting for better care for those with genital herpes. Such groups may participate in activities such as educating, lobbying, developing management guidelines, as well as patient support.
Strength, confidence and commitment is needed to establish and maintain an effective patient advocacy group, and a first step towards this may be to establish a support group.
Organisations represented at the 2nd IHA Patient Advocacy Workshop
- American Social Health
Association
- Association Herpès - France
- Dutch Herpes Information
and Support Organisation
- Glaxo Wellcome
- International Alliance
of Patients' Organizations
- International Herpes Alliance
- International Herpes Management
Forum
- Melbourne Herpes Self
Help Group
- Montreal Herpes Help Group;
Interventions and Services in Sexual Health
- New Zealand Herpes Foundation
- PAREXEL MMS
- Svenska Herpesföreningen
- Sweden
- Swedish Herpes Management Forum
Learning from others' experience
Learning objectives:
- Gain knowledge of two groups that have already established patient advocacy efforts: in the US and New Zealand
- Learn about the types of activities set up by the two groups
- Understand the challenges and achievements faced by the groups
- Gain appreciation of the role and possible structure of an advisory board for your organisation
- Appreciate the keys for successful establishment of a patient advocacy group.
The American Social Health Association (ASHA) and the New Zealand Herpes Foundation (NZHF) are both national patient advocacy groups and founding members of the IHA. They differ from support groups in that, as well as offering information and support to people who need it, they work actively with other groups - such as health professionals, industry and government bodies - to campaign for better care for people in their country with genital herpes. Representatives from both organisations provided insight into why their groups are successful, what they are trying to achieve, and how they go about achieving it.
American Social Health Association
Learning objectives:
- Understand the benefits of support groups - what can be achieved
- Gain practical guidance for starting a support group and the keys to success
- Recognise the potential pitfalls for setting up a support group and how to avoid them
- Understand the reservations of the medical profession and how to get their 'buy-in' for your support group.
For many people, discovering
that they have genital herpes is a nasty shock. Until the stigma that
surrounds the condition is significantly reduced, and the care of people
with herpes greatly improved around the world, there will always be a
need for support groups. Support groups provide people with information
and the chance to talk to others with a similar experience to their own.
Support groups don't go as far as campaigning for improvement in the care
of people with herpes, but they represent an important aspect of the care
that people receive.
They offer the following benefits :
- help people normalise their reactions and feelings
- allow sharing of experiences with others
- allow discussion in an empathetic environment
- provide accurate medical information with updates.
Once your organisation is established as a support group, it may be a natural progression for you to develop into an advocacy group - or part of a national advocacy effort - working to improve the care that people receive in your country. In the meantime, you may wish to determine specific goals for your support group, such as:
- provide a safe and confidential environment
- which is reinforced at every meeting - provide medically accurate information
- improve the social context in the way the infected person views their life.
The slide resources provide some 'how to' tips.
Strategies for partnering with…
Learning objectives:
- Discover the benefits of partnering with medical professionals, healthcare funders and the pharmaceutical industry
- Gain insight into building and maintaining effective partnerships
- Learn how to make the most of common objectives.
For any patient advocacy effort to succeed, partnership with other groups is essential. In particular, the group needs the support of medical professionals (directly responsible for the treatment of the person with herpes); the funders (who decide drug reimbursement rules and thus affect access to treatment) and industry (who develop and manufacture treatments, and who could also provide other resources and help - such as expertise and networks of useful contacts).
It is important that you reach out to these groups and persuade them to be a partner in your efforts. This will help you to:
- build credibility and support
- leverage resources
- simplify your message
- amplify your message
- build a more certain future for your group
- achieve public policy support.
You may find that many of the people with whom you want to partner have very similar goals to yours. A key skill in creating a successful partnership is identifying and maximising those common goals. Patients, medical professionals and pharmaceutical companies all want the following for people with genital herpes:
- accurate diagnosis
- optimal treatment
- information and support
- public education.
Even though their reasons for having these goals may differ, much can be achieved by working together to achieve these ends - which results in a win-win situation. To achieve this, ongoing, open and honest communication is essential, as is mutual understanding and respect for each other's issues and needs.
Effective partnering can be achieved by:
- building a support system that people trust - scientific accuracy in all information/services; no branding/product endorsement; non-profit status;
- establishing an advisory panel that incorporates a diverse membership to provide guidance on complex clinical, social and political issues; provide a 'safety net' for the group; build credibility
- seeking a diverse funding base - which emphasises your group's independence and credibility
- teamwork - acknowledge unique skills of individual members and strengths as a team; focus on specified outcomes; be patient with the process
- working towards building long-term partnerships
- do not wait for partnerships to happen, be proactive, actively seek them with the key stakeholders in your country or area.
It is essential that patients' needs remain central to your efforts. These must be the driving forces behind your work. Patients therefore need to play a major role in your activities and decision processes.
Health professionals
Health professionals are also known as 'providers' - responsible for providing
care and support to a person with genital herpes. Partnering with health
professionals can:
- ensure the scientific accuracy and credibility of your written resources/educational materials/your group
- help gain endorsement for your work
- help further improve clinical practice by devising management guidelines
- help generate support and interest in your group's activities
- help your health professional and their peers to better understand patient needs.
It is important that your group selects a suitable medical professional to partner with. The ideal partner(s) are those who are:
- patient-focused
- proactive
- good spokespeople
- non biased/non-political
- not working to a personal agenda
- leader in their field of work
- well respected by their peers as well as their patients.
They might be a specialist:
- obstetrician
- gynaecologist
- dermatologist
- urologist
- STD physician
- psychiatrist or psychologist
- infectious disease specialist
…or have a more general remit:
- family practitioner
- general practitioner
- nurse
- sexologist
- psychologist
- STD counsellor/nurse.
Ideally you should aim to partner representatives from across the board.
Keys to successful partnering with health professionals:
- respect the fact that health professionals are busy and have little spare time
- discuss what expectations you have of one another
- devise a plan and ask for their input/thoughts - get their 'buy-in'
- make them a member of your 'board' as an advisor.
Health funders
Funders are those bodies responsible for developing reimbursement
policies, helping patients get access to the treatment they need (e.g.
governmental funding bodies, insurance companies, etc). In many countries
they are the 'gatekeepers' of health funding, for example, in the UK the
National Health Service (NHS) is the government funder. In countries where
funders decide which medicines can be provided, it will be essential that
you partner with them to ensure that people with genital herpes receive
the best possible treatments.
First, you need to convince them that you are an organisation with integrity:
- learn about their issues/the way decisions are made in funding
- have a fresh approach - focus on the positive: the solutions rather than the problem
- demonstrate that you are an organised voice for patients
- develop credible medical information resources
- involve your medical professional in discussions
- suggest how your group can help attain their objectives
- include the funder in decisions about your group and its activities.
Second, you need to convince the funder about the need for better treatment for genital herpes:
- generate an ongoing, personal dialogue with them
- share high impact stories
- use the language of the funder - 'targeted', 'outcome-driven', 'evidence-based'.
Then convince the funder of the optimal treatment:
- share and discuss best practice guidelines
- use endorsed material to emphasise your point.
Industry
In order to achieve the objectives your group has laid down, you need
support and resources. Although other sources of help are available, industry
sponsors can play a major role in the success of your group.
Partnering with the industry (e.g. pharmaceutical companies, diagnostic test manufacturers, etc) has many advantages. However, expectations from both groups need to be clearly defined and there are a few rules to be learnt when working with industry.
Learning objectives:
- Appreciate the benefits of effective communication
- Gain knowledge of the types of public outreach efforts undertaken previously
- Learn how to develop key messages for your outreach effort
- Discover how to tailor your initiatives for your target audience
- Learn how to minimize effort by creating partnerships.
Communicating with different audiences is an essential skill for making a success of your patient advocacy group. There are various reasons why we might choose to converse with different groups:
- increase awareness/visibility of genital herpes as an important issue
- increase knowledge: What is it? How is it spread?
- destigmatize herpes
- help reduce the spread of infection.
With any outreach effort, you need to decide which of these outcomes you are trying to achieve. You may wish to refine your objectives further, for example you may want to direct your efforts at increasing awareness of genital herpes among a certain age group in a specific geographical area. Your objectives will depend upon the issues that are relevant to your situation. You can then decide what sort of public outreach effort is needed. For example,
- public awareness
- public education
- provider training
- public policy efforts.
Decide who to target, e.g. teenagers, high-risk groups, 18-25 year age group. Again, this will depend upon the groups most 'at risk' or most 'teachable' in your region. Then tailor your education efforts to your specific audience and decide the best medium for communication. For example:
- radio/public service announcements
- press campaign
- survey/market research as a public relations tool: to gauge attitudes/perceptions/knowledge, which can be used as a news 'hook'
- outreach via healthcare professionals (in-clinic posters, information leaflets).
Whichever medium you choose, have a clear understanding of the key messages you wish to communicate to your audience. The tone of your messages may alter depending on your target audience - you may need to adapt them for each outreach activity. Some examples of messages include:
- Herpes is spreading
The virus can be spread without symptoms being apparent - Herpes can go unrecognised
Approximately 80% of those infected are unaware they carry the virus - Consult your doctor if you experience troubling genital symptoms.
The language should be appropriate for the audience. For example, capturing the attention of teenagers is very different from communicating with medical professionals.
Keep your work to a minimum. Use existing material if it is still appropriate and suitable for your target audience. Also look for opportunities to partner with those trying to achieve similar objectives. For example,
- National Health Service
- health foundations
- industry
- link with other awareness weeks/campaigns/efforts
- re-use material produced by another group (a small copyright fee will probably be payable)
- use creative talent of others/brainstorm ideas
- seek advice of those within target audience to judge pitch of campaign, etc.
Reaching a broader audience slides
Learning objectives:
- Gain understanding of why we need publicity
- Learn how to gain publicity
- Master how to establish a good relationship with journalists
- Recognise the potential pitfalls to working with the media.
Whatever the stage of an advocacy programme, the media can be an important ally in helping to achieve your objectives. You will need publicity to:
- increase awareness about genital herpes and your organisation
- remove the stigma/dispel myths
- educate the community
- attract support/funding/volunteers
- increase patient empowerment
- influence policy makers
- correct misinformation.
However, publicity is not always completely within your control so you need to plan carefully: decide what you want to achieve, what your messages are, how to make journalists interested in that message.
How to work with the media slides
How to develop a business plan
Learning objectives:
- Acknowledge the need for a business plan and clear goals
- Appreciate the mechanism of planning
- Discover how to analyse patient needs in your country
- Learn how to perform a SWOT analysis for your organisation
- Develop expertise in developing a business plan.
A business plan helps to transform your long-term vision of what you wish to achieve into a more practical, realistic and demonstrable format. It is an essential prerequisite in your efforts to partner with other stakeholder groups.
To develop a sound business plan you need to have clear objectives and a strategic vision. A business plan is essential when applying for funding from other bodies, who will want to know that their funds are being invested wisely, with measurable outcomes.
How to develop a business plan slides and business plan template
Tips for establishing a not-for-profit organisation
Learning objectives:
- Appreciate the benefits and challenges of establishing a not-for-profit organisation
- Learn how to establish a diverse funding base
- Know who to approach for funding
- Gain insight into the types of activity that certain groups might fund
- Learn how to ensure your objectives are not compromised when accepting funding
- Know the keys to successful fundraising.
The most credible of patient advocacy organisations are those that operate on a not-for-profit basis. Such organisations demonstrate independence and integrity, and have a strong platform for seeking funding.
However, operating as a not-for-profit organisation holds its own challenges. Setting out a clear plan of what you want to achieve will help focus your activities and efforts.