Citizen participation

Untreated dental caries is Nepal’s most prevalent childhood disease, exceeding both malnutrition (43%) and vitamin A deficiency (58%). Over 69% of adults over fifty suffer from dental caries—one of the most widespread, least attended, and most easily addressed health crises facing rural Nepal. It is associated with a host of health problems including chronic infection, severe recurrent pain, and heart disease.
Existing solutions are wholly inadequate. Ninety percent of dentists live inside the Kathmandu valley while 80% of Nepalis live in rural villages. In addition to sparse access, there is virtually no awareness of risks associated with oral disease, or of prevention. Dental pain and tooth loss are widely considered inevitable—a problem of both infrastructure and attitude.

Our solution has two sides: infrastructure (locally-based weekly dental clinic) and information (community education to instigate behavior change). Infrastructure is easily established by sending a local health practitioner to a 3-week dental training in W.H.O.-endorsed dental medicine. Many health initiatives stop there.
Education/behavior change is most of our work. Many rural villagers believe dental extraction can cause blindness. Subsistence farmers are oriented to acute pain, not prevention, but value purity. Vendors may not sell fluoridated toothpaste. Changing attitudes requires a nuanced understanding of local belief systems and cultural tendencies. Our Teams, as members of these communities, address these in issues in an organic and nuanced manner.

Our vision is for rural residents to have complete agency over their own oral healthcare. Our objective, therefore, is a gradual change in heath culture that ends with an organic and sustainable oral health care system in each project area. We aim to put in place all the factors that cause patients to seek their own treatment (access, affordability, education, belief systems)—and to reduce the number of patients that get created in the first place. We measure success by how many people can and do make effective prevention and treatment choices. We believe the most essential ingredient in achieving this goal is local creativity, which brings each unique replication to life, and in each area renders our facilitation obsolete over the course of two years.

Presently, the vast majority of rural villagers do not have access to dental care except in the case of temporary “camps,” which occur unpredictably if at all, or in city hospitals, where subsistence villagers often cannot afford the time or expense of travel, even in cases of acute dental disease and pain. Residents in our working areas get free dental education and examinations. Treatments are extremely inexpensive; a filling is 60% of the cost 1kg of sugar, low enough to be affordable, high enough that patients learn to value the service. The value proposition is immense in comparison to the current alternative of no care at all, and is further magnified as patients come to understand how good oral hygiene reduces their risk of infections, bronchial, coronary and other diseases.

Our primary customers are rural villagers without access to primary dental care, beginning with children and extending to adults. Another important constituency consists of village elders, teachers and other influential members of the community. Their understanding, support and participation are critical to launching, effective implementation and successful handover to the community of KOHCP programs within two years.

Primary outreach is via seminars, conducted by teams at schools to include students, teachers and adults living nearby. Seminars offer oral health education focusing on prevention, free screening, and referral to the village clinic. On day two of a seminar, the clinic opens for regular treatment and receives patients from the previous day’s referrals. Seminars generate most of our patients, especially early in the seed cycle. Additionally, each school appoints an oral health coordinator to conduct a daily brushing program and eventually manage annual checkups for students. Teams reach out to local vendors to ensure fluoridated toothpaste is available. Finally, Teams develop unique outreach strategies in their villages: competitions, promotions, new partnerships, original marketing, etc.

Village teams comprised of a dental technician, clinic assistant and community member guide program activities which include a weekly dental clinic offering primary dental care and referrals to city partners for complex cases; seminars, based at schools, which educate the community about dental treatment, introduce new local services, and lay the foundation for prevention; outreach to local vendors, to ensure availability of fluoridated toothpaste; daily brushing and oral health education in schools, by training of an “oral health coordinator” from each school; innovative strategies, unique to each team, to promote oral health prevention and use of treatment facilities. We support teams with training, strategic guidance, resources for two years, and coordinate with government ministries.

There is no market competition for oral health services in rural Nepal. The legacy of health “camps,” which provide dental treatment for free, poses a to challenge self-motivated behavior change and to the collection of nominal treatment fees. We therefore choose project sites with a demonstrated need and acceptance among stakeholders (government and social leaders, educators) of the 2-year seed cycle. Our educational programming also focuses heavily on this challenge.

The government of Nepal has begun dental training for government staff in villages. Because our goal is to work with and not in competition against existing systems, we will continue adapting our approach incorporate these government initiatives in to our programs.

Every village is different. The societal and cultural factors that hinder changes in behavior will be new to each and every replication. Being keenly attentive to these nuances is essential. Similarly, environmental factors such as access to water and roads grow more difficult as we expand to more remote areas. Solutions to these challenges are often clarified in discussions with local teachers or leaders, which form the foundation of our model.

Organizationally, Eva Nepal partners locally with a small Nepali nonprofit to run its current programs in central Nepal. This partner is unlikely to have the capacity to expand broadly in Nepal. Therefore, we will partner with other organizations and groups in different parts of the country.

Short-term, our seed-to-handover process allows us to grow impact without parallel budget growth. Within a year, we will publish a project manual to document our replicable model and expand primarily by supporting new implementing partners. Long-term, we aim to refine and share this “how-to” manual with the World Health Organization for global reach.

We have been operating in 2 villages for 6 and 3 years, respectively. Combined they serve an area of 24,000 people and 22 schools. Over 1,000 directly participate in our programs annually and we have seen patients walk 2+ hours to our clinic after referral from a KOHCP seminar. We have refined our model significantly and in 2013 handed over our pilots and implement three new sites.

Replicate our program in approximately 20 villages in Nepal’s Kaski district. Document oral health outcomes, integration of oral health education in to schools, and successful transitions to local project ownership. Complete a project replication manual. Secure funding from USAID, DFID, etc. See our model independently implemented and adopted by other institutions, including the W.H.O.

We have added an area of 12,000 people to our project in 2013. With roughly $150K of funding in the next three years we will replicate in about 20 villages, serving roughly 150K of the estimated 660K residents in Nepal’s Kaski District. We will complete our project manual in 2013 and refine it over the next two years. We hope to see our model independently implemented by other institutions in Nepal in 2016, endorsed and/or deployed nationally by the Nepali government by 2017, and reviewed by the W.H.O. for global replication by 2018.

Patient leaders have a valuable role to play in tackling the problems facing health and social care at a national and local level, but we need to improve the development of and access to learning opportunities in order to grow this pool of talent, Amidst chaos of reform and unprecedented challenges to improving health, the biggest asset we have - people who live with health problems and use services - remains untapped. Instead, patients are a problem to be solved, not the solution. Meanwhile, patient and public engagement has been co-opted by institutional interests as a buffer against change, rather than as a co-production engine for it. We need a new generation of 'unusual suspects' who can act strategically to help tackle crises in health and social care

Patient leadership is:
Rooted in self-leadership - patients learning about themselves to steer their own life.
A work in progress - good leaders develop through continuous learning
Dependent on context - involves a complex mixture of interdependent behaviours

Our learning approaches incorporate:
Co-design and co-delivery
More than ‘chalk and talk’ - We use highly interactive methods
Working with what happens in the room - Leaders learn from practicing and reflecting on how they behave
Acting into a new way of thinking - We help people to construct meaning and knowledge from experiences by practicing on their ‘live’ issues
Working with others – integrating dialogue and inquiry
Process skills of leadership - skills of relationship-building and influencing

We provide patient leaders - patients, service users and carers who influence change with:
Learning and Support - a variety of face to face offers and facilitated e-learning
Network and Community of Practice - Patient Leaders become Members of The Centre for Patient Leadership
Ongoing support to take next steps

We provide healthcare organisations with support based on co-production principles to foster patient leadership

Equipped with the capability to influence change, PLs will help shift power relationships underpinning healthcare to a truly patient-centred model. This will transform:
Patient experiences and outcomes (responsiveness)
Quality of decision-making (transparency, governance and accountability)
Trust and confidence
Financial viability of healthcare systems

We are in a unique position with regards to the UK and international market, as
Thought-leaders (around the policy and practice of patient leadership)
Pioneers in providing learning and support to a new generation of health leaders able to shift the very fabric of how health and healthcare is delivered.
Offering constructive and sustainable solutions to healthcare organisations in the current economic climate

Our customers are two-fold:
1. Health and healthcare organisations (customers) - local, regional, national, international - these organisations resource individual beneficiaries (patient leaders) who are:
2. Patients, service users and carers (direct beneficiaries)

We have run learning programmes for organisations at national, regional and local level (e.g. NHS Commissioning Board, now NHS England; NHS Institute for Innovation and Improvement; Midlands and East Strategic Health Authority; National Voice - the umbrella organisation for the health voluntary sector; various commissioning organisations and provider trusts). We have undertaken a variety of programmes, ranging from one day workshops to five month programmes (with coaching) to over 500 patient leaders.

We have marketed progammes to commissioners, providers & national agencies. Given the shifting policy environment, our marketing strategy will segment in the following ways, towards:
1. National agencies (in service development, research, third sector) - these will also help ceate the environment for patient leadership
2. Commissioners of health and social care
3. Providers (acute hospital trusts, community and primary care providers)
4. Condition-related organisations/initiatives (eg. building on recent success in renal field) & moving towards focus on long term conditions
5. Locality and regionally based work (building on recent successful programmes in the Midlands)

Each of the above require bespoke business cases that focus on relevant incentives (e.g. safety for hospitals)

We provide
Learning and support for Patient Leaders
Networks and communities of practice;
Information, advice and support for Patient Leaders

For organisations:
We provide organisational development support that fosters the cultures and systems for patient leadership (NB. We have just produced the first Guide for NHS organisation to foster patient leadership - see 'resources' section on our website)

We also undertake research and policy with partners that will help create the wider cultures and systems and enviornment for patient leadership

We are unique thus far. National professionally-led training organisations are beginning to take an interest in patient leadership, but don't (and may never) truly understand the model; Patient-led & Third Sector organisations are at an early stage of being able to deliver training programmes and these are based on very different learning models to those we believe in and offer.

There is a window of opportunity (3-5 yrs) to create a social movement for patient leadership before an idea like this is 'captured' by mainstream organisations and distorted to fit institutional needs and the status quo. In this time, In this time, our work needs to support & develop a critical mass of patient leaders who share the values and have the skills necessary to radically shift the face of healthcare

The current policy and practice environment is volatile and organisations do not yet recognise the value of patient leadership - and may not want it if they truly understood it! On the other hand, the steep rise in demand demonstrates that another set of players want us to step up to the mark. To overcome this paradoxical state of affairs, we need to:
Hone and articulating the vision - communicate the business case to all stakeholders
Build capacity for delivery at scale and pace
Refine the operating and business model
Clarify roles & responsibilities;
Move to mixed investment strategy
Ensure quality
Beware of mission creep (eg other areas of citizen/lay leadership)
Stick to our values
Develop range of accessible learning offers/curriculum (incl. facilitated e-learning)

These phases are largely being run in parallel:
Phase One: Market Research & marketing strategy based on refined assessment of current landscape and potential funders (including assessment of investment and philanthropic options)
Phase Two: Building infrastructure, operating model and capacity for delivery at scale;
Phase Three: Developing the offer (to patient leaders, organisations)

We have significant interest in our work from organisations & Patient Leaders themselves; hugely positive feedback from programmes (500 'alumni') Recent experience of delivery at scale and pace; Proof of concept of operational and delivery model (incl train the trainers; online network; virtual learning environment); high profile (e.g. articles and network interest)

In the next 3-5 years, we aim to grow from £100k/yr turnover to £1-2m/year (yr 2) and double that by year 5. This will depend on developing 'Patient Leaders' as the 'go to' place for an expanding range of learning programmes and establishing the Centre for Patient Leadership as a non-profit making research & policy organisation.

Short term (1-2 yrs): £500,000 turnover, six new learning programmes (300 alumni); development of online network; six new core associates; Establishment of operational model to deliver at scale and pace (with financial director on board at least p/t and project manager f/t)
Medium Term (3-5 rs): £1-2m turnover, 40 programmes, expansion of offers; Thriving membership of community; UK-wide delivery;

NB. There will be a general election in 2015 and this will inevitably lead to shifts in policy and practice. We will need to adapt our work and growth plans for these circumstances.

Estableceré dos criterios para medirlo.
El primero, tiene relación con la cantidad de gente.
El segundo, dice relación con una evaluación de impacto, que resultara de la sesión de feed-back que se tenga con los voluntarios-tutores, en los cuales se tengan en cuenta interrogantes como la cantidad de información aprendida en el taller, la calidad de las herramientas utilizadas y la cantidad de gente que parece mostrar interés comprometido.

Me parece que el indicar principal es, lógicamente, la continuidad de este proyecto. Seguir reclutando gente y generando espacios de discusión; ahora bien, en alcance que espero llegar a obtener, es tener la posibilidad de implementar este proyecto en alguna otra región del país.Como indicador, no solo denota, en mi opinión, la sostenibilidad de la idea, sino que cuento con elementos básicos que permitirán una ampliación eventual mayor.

El indicador principal es la cantidad de gente asistente a este proyecto y la cantidad de comunas donde logro ser emplazada con el numero mínimo de participantes que establecí anteriormente. De la misma manera, otro indicador relevante serán las sesiones de critica y evaluación que se tendrán con los voluntarios-tutores a fin de cada taller; quienes poseerán una pauta evaluativa con ciertos aspectos los cuales deberán calificar de 1 a 5. Con estos "ciertos aspectos" me refiero a: Calidad Organizacional, Efecto de las dinámicas, Tiempo de duración, etcétera.

La primera forma de reclutar será a través de mi propia red social y de amistades cercanas, luego avanzaremos a través de redes sociales virtuales donde sabemos que podemos llegar a un gran número de personas que quiera participar en este gran emprendimiento para y por la sociedad en la que estamos compartiendo.

Estaremos en constantes capacitaciones y reuniones, donde estaremos atentos a los talentos latentes de los participantes, con el fin de potenciarlos para y animarlos a ser agentes de cambio para cuando se les requiera.

Luego de insertarnos como un grupo consolidado en sociedad, apuntamos a seguir optando constantemente en concursos y proyectos municipales o comunales,. Pero principalmente, cuando existen personas con ganas y disposición, todo lo demás es secundario...

People are looking for needles in the haystack, but the haystack is made of needles!

We are missing the health research world's greatest assets: people and their health data, unified across all health and disease.

People's (patients') health information must become easy to assemble, and must be done cross-disease and with the participants in control of what they share. Only then will we create the next breakthroughs in research.

The world's first ever participant-controlled, cross-disease registry for health and disease data.

We are helping fuel the movement toward individuals, families, and communities reclaiming control of their health.

We invite them to control the registry that contains their health data.

Respecting each participant's sharing/privacy desires, we help researchers engage with people and their data: to generate research hypotheses, discover research cohorts, enroll studies/trials, and achieve breakthroughs more quickly than before.

For consumers: add your piece to the health puzzle and let support and research come to you.

For researchers: a high-engagement source for growing research cohorts

For disease advocacy orgs: create deep, lasting connections with your constituency and accelerate research breakthroughs

- Consumers
- Researchers/Pharma Cos
- Disease Advocacy Organizaions

PR
Links from partners
Viral loops
SEO
SEM
Events

Developing systems and user experiences
Operating databases
Exercising ethical governance
Attracting consumers & researchers

So many narrow or incomplete registries in the world. Some of those organizations may feel threatened by how Reg4All puts control in the hands of participants. With so many registries out there, we see some competition for the attention of consumers and researchers. But our marketing/attraction strategies will be quite different.

Genetic Alliance does not have very much experience running consumer-facing web products, and doing good branding and marketing. This is why we brought in an Entrepreneur-in-Residence who has deep expertise in these areas.

We also need more cash investment during the start-up phase on our way to reaching financial sustainability.

CONSUMER SIDE: start with our core audience in rare disease. Use viral loops attract many more. Event marketing, SEO, SEM.

RESEARCHER SIDE: start with trials most desperate to enroll. Letters to researchers/medical centers. Event marketing. SEO, SEM.

We have proven with a pilot that our approach works. We are receiving high levels of interest from all quarters. We have a proven, collaborative team executing. We are using lean startup techniques and will execute micro- or macro-pivots as we grow.

2013: Tens of thousands of consumer participants. Tens of studies.
2014: Hundreds of thousands of consumer participants. Hundreds of studies.
2015/2016: Millions of consumer participants. Thousands of studies.

2013: Tens of thousands of consumer participants. Tens of studies.
2014: Hundreds of thousands of consumer participants. Hundreds of studies.
2015/2016: Millions of consumer participants. Thousands of studies.