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How do you minimize risks and harms in patient advocacy innovation?

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Patient advocacy innovation is the process of creating new ways to improve the quality, safety, and experience of health care for patients and their families. It can involve developing new tools, methods, policies, or partnerships that address the needs and challenges of patients in different settings and contexts. However, innovation also comes with risks and harms that need to be minimized and managed. In this article, you will learn how to apply some key principles and practices to reduce the potential negative impacts of your patient advocacy innovation efforts.

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1 Identify the problem and the stakeholders

Before you start innovating, you need to have a clear understanding of the problem you are trying to solve and the people who are affected by it. This will help you define the scope, goals, and criteria of your innovation project and avoid wasting time and resources on irrelevant or unrealistic solutions. You also need to identify and engage the stakeholders who have a stake or interest in the problem and the solution, such as patients, caregivers, health care providers, policymakers, or funders. Stakeholders can provide valuable insights, feedback, and support for your innovation process and help you avoid potential conflicts, ethical issues, or unintended consequences.

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Farah Buck, MSN APRN FNP-BC PMHS NC-BC CNP

Board Certified as a Family Nurse Practitioner, Pediatric Mental Health Specialist, and Holistic Nurse Coach
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This is a great point, funders are usually the most powerful stakeholders providing feedback on a project. They have skin in the game. Stakeholders that include patients, providers, and others are most effective when they encompass a board of directors. The Federally Qualified Health Centers are an example of innovative community health care innovations that are required to have a board of directors including community members.

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2 Co-design and co-produce with patients

One of the core principles of patient advocacy innovation is to co-design and co-produce with patients. This means involving patients as equal partners in every stage of the innovation process, from identifying the problem, generating ideas, testing prototypes, implementing solutions, and evaluating outcomes. Co-design and co-production can help you ensure that your innovation is relevant, acceptable, and beneficial for the patients you are serving and that it respects their rights, preferences, and values. It can also help you foster trust, empowerment, and ownership among the patients and improve their satisfaction and engagement.

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Farah Buck, MSN APRN FNP-BC PMHS NC-BC CNP

Board Certified as a Family Nurse Practitioner, Pediatric Mental Health Specialist, and Holistic Nurse Coach
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In my experience patients are not going to agree uniformly on specifics of an innovation. If someone has a strong vision for a specific narrow population, it is easier to measure and apply the feedback. I do agree that co-design and co-production of a solution to a complex problem, for example, patient engagement, will be more successful than leaving patient perspectives out of the equation.

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3 Use evidence and data

Another key principle of patient advocacy innovation is to use evidence and data to inform your decisions and actions. Evidence and data can help you identify the best practices, gaps, and opportunities in the existing situation and compare the effectiveness, efficiency, and impact of different solutions. They can also help you monitor and measure the progress and outcomes of your innovation project and identify any risks, harms, or areas for improvement. You should use reliable, valid, and relevant sources of evidence and data, such as literature reviews, surveys, interviews, focus groups, observations, or experiments. You should also ensure that you collect, store, analyze, and share your evidence and data in a secure, ethical, and transparent manner.

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4 Test and iterate

One of the best ways to minimize risks and harms in patient advocacy innovation is to test and iterate your solutions before scaling them up or spreading them widely. Testing and iterating means trying out your solutions in small-scale, controlled, and realistic settings and situations and learning from the feedback, results, and experiences of the users and stakeholders. Testing and iterating can help you identify and address any flaws, errors, or drawbacks in your solutions and make necessary adjustments or modifications to improve them. It can also help you assess the feasibility, usability, and acceptability of your solutions and prepare for any challenges or barriers that may arise in the implementation or adoption phase.

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5 Evaluate and disseminate

The final step in minimizing risks and harms in patient advocacy innovation is to evaluate and disseminate your solutions. Evaluating means measuring and analyzing the outcomes and impacts of your solutions on the patients, stakeholders, and the system and determining whether they achieved the intended goals and criteria. Evaluating can help you demonstrate the value and effectiveness of your solutions and justify their continuation or expansion. It can also help you identify any unintended or adverse effects or consequences of your solutions and take corrective or preventive actions. Disseminating means sharing your solutions and their outcomes and impacts with others who may benefit from them or learn from them. Disseminating can help you spread your solutions to a wider audience or context and increase their reach and influence. It can also help you generate interest, support, or collaboration for your innovation project or future endeavors.

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6 Here’s what else to consider

This is a space to share examples, stories, or insights that don’t fit into any of the previous sections. What else would you like to add?

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Veronica P.

Passionate Rare Disease Patient Advocate
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While this is the flow for most innovative processes, it does not apply to patient advocacy. Patient advocacy is not a standardized process. To innovate processes, processes have to exist.

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Dr. Garima Sharma

Personalized Medicine | Digital Health
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Start by conducting a comprehensive risk assessment to identify potential hazards & vulnerabilities. For instance, let's say you're developing a new digital platform to connect patients with resources. Conduct user testing & collect feedback to understand any potential risks or negative outcomes. Implement robust security measures to protect patient data & ensure privacy. Collaborate with healthcare professionals & legal experts to ensure compliance with regulations. Continuously monitor & evaluate the platform's performance & user experiences. By prioritising patient safety & well-being, & by being proactive in risk management, you can minimize harms & create a safer environment for patient advocacy.

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How do you minimize risks and harms in patient advocacy innovation?

1

2

3

4

5

6

1 Identify the problem and the stakeholders

2 Co-design and co-produce with patients

3 Use evidence and data

4 Test and iterate

5 Evaluate and disseminate

6 Here’s what else to consider

Patient Advocacy

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How do you minimize risks and harms in patient advocacy innovation?

1

2

3

4

5

6

1 Identify the problem and the stakeholders

2 Co-design and co-produce with patients

3 Use evidence and data

4 Test and iterate

5 Evaluate and disseminate

6 Here’s what else to consider

Patient Advocacy

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