Help out Rare Diseased People while using Modern Technology

We are struggling to solve the diagnose and treatment problem of rare diseased patients in rural areas.  As there are several reasons in which they are going to stuck of as they have lack of knowledge about diseases even for rare disease, due to in adequate health literacy they are not proper and relevant knowledge about it.  Due to budget constraints they do not struggle to find the solutions of their rare disease.  Specially in rural areas there are a lot of social barriers occurs as people feel shy, burden of dependency and stigma for family in the society.  So ultimately that they are unaware to use the information technology in healthcare concerns and non health conscious also.  Round about 4.7 % of the total world population is affected by a rare disease at any given time, according to new research 7000 rare diseases are affected the entire population of the world. collectively affecting more than 350 million people around the world and 0.7 million in Pakistan.  So that health literacy, get rid from isolation, briefing to family regarding patient care and technology based training for caring the patient are the factors which will positively and efficiently contribute to the the usage of technology to treat their problems. 

As we are observing that the world is now a global village and everything can be controlled from our palms while using the innovative modern information technology techniques.  Its time to take a continuous watch on the health and activities of rare diseased person.  So a specific health watch is going to be introduced first time in the rural areas of Low and middle level income countries as Pakistan and there treatment will be preferred to use the telemedicine technology. First of all a community survey will be conducted by lady health workers in all the localities of a village, town or a small city, reach at rare diseased person registered them in central data base.  Basic information of patients and care givers will be taken.  An awareness session with caregivers will be established and to let them know that how the watch and telemedicne will be worked and treatment comes at their door step. For keeping progress time to time house visits will be done and remarks from family members will also be noted and their difficulties will be addressed positively.  

Approximately 0.7 million  people are striving from rare diseases in Pakistan.  Most of them live in the rural areas having low health infrastructure.  The government invest more in the urban sides of the country and do less attention to rural and remote areas of the country due to political priorities etc.  By these reasons these communities are under served by all means that is lack of health and formal education institutes overall infrastructure,  reach out to basic needs, living in poverty etc. 

Some of them are away from a basic need that is internet and do no know how to utilise in different sectors of life.  By giving them knowledge and recognise their importance about disease and its cure, continuous tracking, online medical visits, laboratory tests, food supplement, will exactly change their lives with positive impact.  They are precious for us and are going to care them as because they are also rare.

We have a more than 10 years’ experience to work in public health activities.  While visiting in different localities we have a faced a number of issues and concerns of general public and from that the one main concern was the care of diseased patients and their positive survival in the community.  As we have most experience in rural and remote areas which have less health facilities and less access to primary health so that we have deep understandings of the issues of the people.  By visiting these communities for more than one decade the households discuss with us time to time their rare diseased patient complications and also wish its solutions at their households because the primary health care is far away from them and they always suffered from financial constraints.  As public health servants we feel their pain and concerns but the local government do not give us the opportunities to deal with them but we make a plan in our mind which constructed on strong grounds with the passage of time.  The initial draft was discussed with the engagement with specific community members and we were taking their inputs on our current solution so by taking their suggestions and opinions we are able now to develop this implementable, feasible and scalable solution.  In this concern we not only made the individual discussions with them but also organised the different types of sessions with them so that for making of this idea and solutions the community members give much input as actually this is for the facilitation for them so their ideas are worth important.  The local community health volunteers have also a vital role for finalising the solution because they are the permanent residents of the community and they are much aware of the needs of particular diseased patients.

Financial Barriers:  Of course the finance concerns more for development and implementation of any project.  For solving this issue we also suffer from different barriers.  As in rural areas people are low income and have less resources also so we need the desired funding’s to reach this solution at he house of every rare diseased person.  For it we need the funding from different donors to overcome the challenge.

Technical Barriers:  Access of internet is really a need of time at every desired house.  The caregivers need to be trained in this regard. So those for this we need to establish the trainings for them so that they may aware of it and use it when needed.

Legal Barriers:  It will be viewed in the concerned country that weather it is prohibited by the legal concerns or not, if it is not concerned that we need to talk with them to overcome the issue and contacting with legal authorities.

Cultural Barriers:  The culture also effect on this solution because we see that something which is accepted in one culture may be not accepted in another culture.  So we have to address this barrier by making some actions so that it may be accepted to everywhere and people do not feel shy to understand it. Market Barriers:  Market have different

In rural areas of middle and low level countries people are not well aware from the usage of information technology.  So it will bring a vital change in that areas which will focus on the health of the rare diseased persons and caregivers. Health Watch with combination of Telmedicine will bring a revolutionary change in the life of rare diseased persons.  Its quite innovative and bring change in the market and have a broader positive impact, as people are not using it and facing a lot of problems to take care the patient and for their medication also so at home base we will be able to continuous watch the patients and his health for better planning to improve it while using the modern technology which is cost and time efficient also.  It will surely change the market dimensions and with the help of information technology we will be able to bring change in the market.

Imapct Goals:

The Easy Life:

Continuous Look after:

More Cost and Time efficient:

Facilitate Caregiver also:

Get rid from Extra Burden:

Out Of Home but Within Eyes:

Reduced Travelling Cost:

A Wide network of communication:

Ensure Healthy Lives and Promote well being for Rare Diseased Persons:

Ensure Access to affordable, reliable and modern Health innovations:

Protect, Restore and promote sustainable healthy measures for Rare Diseases:

Strengthen the Means of providing the IT tools to caregivers: