Patient Advocacy: How Can It Be Done Better?

13 Jul Patient Advocacy: How Can It Be Done Better?

Here at OVID Health, we are proud to be experts in supporting patients to secure change through patient advocacy. In this series of blogs, we are sharing some of the insights we have gained working with our clients and running the Patient Partnership Index.

The importance of patient advocacy

Patient engagement is important to industry, patients, and regulators.

For industry, it is critical to gain valuable insights that help generate solutions which better meet patient need. By keeping the focus on the patient in every aspect of their work, at every stage of the life cycle, pharmaceutical companies are able to translate patient insights into meaningful innovations, more personalised treatments, and better outcomes.

Regulatory bodies also value patient perspectives, who are rightly seen as experts by experience, enabling healthcare decisions to be more effective.

For the patient community, early and collaborative engagement can generate enhanced relationships and help build trust in industry. This empowers patients to be more informed, make educated decisions about their treatment, and become more active in advocating for their own care. As a result, patients experience optimal care and improved outcomes.

Our principles for best practice patient advocacy

Collaborations between pharmaceutical companies and patient organisations must be ethical, transparent, and based on a legitimate need, ultimately driving better health care management and patient outcomes.

As founders of the Patient Partnership Index, OVID Health – working in partnership with patient groups, pharmaceutical companies, and independent experts and academics – developed the following framework to assess best practice partnerships between patient groups and pharmaceutical companies:

1. Engagement: Pharmaceutical companies should embed patient partnerships across the company, from CEO or MD level down and regularly ask how the needs of patients are being met;
2. Co-creation: Pharmaceutical companies should fully co-create collaborations with patient organisations, from concept to delivery;
3.  Transparency: Pharmaceutical companies should be transparent and share knowledge and expertise relevant to patient organisations;
4.  Empowerment: Pharmaceutical companies should show genuine commitment to supporting patient organisation partners to grow and thrive to serve their community;
5. Innovation: Pharmaceutical companies should always be innovating in their partnerships to increase impact;
6. Impact: Pharmaceutical companies should measure the impact of patient organisation activities regularly and make sure they are evidenced clearly.

From an organisational perspective, best practice patient advocacy requires:

• Patient advocacy to be everyone’s responsibility and built into day-to-day roles to embed it into the organisation’s culture.
• Patient advocacy to be proactively considered at the start of any new project, at every stage of the life cycle – from clinical trials through to uptake.
• The right processes, policies, ways of working, and resources
• The value of patient engagement to be communicated internally to build advocates.

The progress we’ve seen to date

Over the three years that the Patient Partnership Index has run, we have seen huge changes in the way that pharmaceutical companies and patient organisations have approached these partnerships. The standard has improved and the partnerships have become more sophisticated, collaborative, and impactful. In addition, we have also seen consistency on what makes a good partnership, and what patient organisations want to see from industry to ensure that patients are empowered in the most impactful way.

Four things really stood out in last year’s PPI:

1. A long-term partnership – Long term partnerships lead to stronger communication and trust, which are core to any successful project, as well as engaging as equal partners in the collaboration. Partnerships that establish and build on a foundation of shared purpose go on to achieve the best results. This can mean building on an existing piece of work, and adding value to this, rather than trying to start from scratch and duplicating efforts.

2. Tackling deep routed problems – Health inequalities, stigma, or underrepresentation in disease communities are all issues that both patient organisations and industry agree need to be tackled and that they can have an impact when working in partnership to tackle. The collective knowledge and experience allow for real solutions to be explored.

3. Co-creation – Building a project from the start will generally lead to better outcomes, as partners will be completely aligned to the same strategic direction and objectives. However, when this is not appropriate, which may be the case if an existing project has already been set up and a partner is brought in to add value, you must be able to demonstrate clearly aligned values and why the project will grow in strength by adding new perspectives.

4. Impact Impact Impact – The single biggest outcome that all parties want to see from partnership working is impact. This should be clear from the start of the project, including how it will be measured. Impact sometimes takes time though and cannot be achieved in a single year. If that is the case then it should be clear what signposting impact can be demonstrated initially, before moving on to the ultimate impact in the longer term.