Stopping the virus

Stigma remains the biggest obstacle to HIV prevention and treatment

Young people between the ages of 15 and 24 are particularly affected by stigma around HIV.

There have been great strides and many important victories in the fight against HIV. Scientific innovations and sustained investment have been the most important weapons in this ongoing battle.

Nevertheless the epidemic retains a powerful grip – especially on people in Africa. In sub-Saharan Africa, 19.4 million are living with the virus. In 2016 an estimated 15,000 new infections occurred every week in the region.

Treatment and prevention of HIV are twin endeavours; they rely universally on two elements. The first is the interaction of HIV positive and negative people with HIV services. The second is the willingness of people to modify their risky behaviour and avoid negative health consequences.

Adherence is the cornerstone of these processes: a commitment to taking medication or adopting a risk-reducing behaviour consistently over time. By adhering to their antiretroviral or ARV regimens those living with the virus are able to lead long, healthy lives. They are able to eliminate the chance of passing on the virus to their partner(s). The concept of an undetectable virus is an untransmissable one is now acceptable.

With good adherence to an HIV prevention pill or pre-exposure prophylaxis or consistent use of condoms, HIV negative people can protect themselves from infection.

But real and perceived stigma can undermine all these efforts. This is because stigma stops people from getting tested, stops them discussing their test results with intimate partners when they do test, and then staying on their treatment. Unless stigma is addressed, the aim of ending the AIDs epidemic by 2030 – one of the United Nations’ Sustainable Development Goals – is unlikely to become a reality.

The logic behind stigma

Stigma happens when disgrace and shame become associated with an attribute, such as being HIV positive. It results in the person with the attribute being discredited or socially renounced. When stigmatised beliefs are widely held in a community, hostility and discrimination towards stigmatised people becomes common.

A stigmatised person can start to believe these views as well and develop a self-depreciating internal representation of themselves. This is known as internalised stigma. It can lead to diminished mental health and emotional distress. Both general and internalised HIV-related stigma can compromise a person’s ability to seek and stay on treatment. And it can prevent people from taking steps to prevent infection.

For instance, a woman living with HIV could choose not to go back for more medication because she’s scared someone from her community will see her and learn her status.

Conversely, a sexually active teenager might not ask a healthcare professional how she can prevent HIV if she is afraid of being judged for having sex.

There is evidence that these scenarios still play out. The HIV Stigma Index conducted in South Africa in 2014 found that about 45% of the respondents experienced internalised stigma. And 39% lived in fear of potential stigma. Young people between the ages of 15 and 24 were particularly affected by all types of stigma.

Stigma on top of stigma

Stigma has the negative psychological consequence of making it more difficult for people to cope and find social support. It also reduces their ability to overcome other barriers to adherence, such as unfriendly healthcare services or side effects from medication.

The research shows that people who do not experience internalised stigma tend to be more successful in adhering to treatment and more capable of overcoming other barriers to access treatment and prevention services. HIV stigma poses additional difficulties for positive people who already belong to stigmatised population groups, such as men who have sex with men transgender people, sex workers, and people who inject drugs.

Stigma against these groups already reduces access to healthcare services and social support. But disclosure of being HIV positive can result in people facing even more stigma, discrimination and hostility.

This is especially the case in African countries where homosexuality and sex work are criminalised.

Moralistic support for criminalisation often interferes with public health initiatives. As a result, stigmatised populations are frequently made more vulnerable to HIV infection due to this discrimination and restricted access to healthcare services.

Changing the tide

The good news is that stigma can be reduced if three basic interventions are put in place.

Firstly, through the implementation of effective and sustained mass media campaigns and health promotion aimed at dispelling the common myths. These campaigns should involve HIV positive people as message bearers.

Secondly, normalising and promoting the interaction with HIV prevention services. What is needed here are more people openly engaging about HIV testing and taking pre-exposure prophylaxis.

And thirdly laws and policies that protect those living with the virus from discrimination and promote them being able to access healthcare services.These are especially important for key population groups living in countries where criminalisation disrupts public health strategies.

The writer is a professor of medicine and deputy director of the Desmond Tutu HIV Centre at the Institute of Infectious Disease and Molecular Medicine, University of Cape Town.

This article was first published on The Conversation.

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What hospitals can do to drive entrepreneurship and enhance patient experience

Hospitals can perform better by partnering with entrepreneurs and encouraging a culture of intrapreneurship focused on customer centricity.

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Most of these tech enabled solutions have emerged as hospitals look for better ways to enhance patient experience – one of the top criteria in evaluating hospital performance. Patient experience accounts for 25% of a hospital’s Value-Based Purchasing (VBP) score as per the US government’s Centres for Medicare and Mediaid Services (CMS) programme. As a Mckinsey report says, hospitals need to break down a patient’s journey into various aspects, clinical and non-clinical, and seek ways of improving every touch point in the journey. As hospitals also need to focus on delivering quality healthcare, they are increasingly collaborating with entrepreneurs who offer such patient centric solutions or encouraging innovative intrapreneurship within the organization.

At the Hospital Leadership Summit hosted by Abbott, some of the speakers from diverse industry backgrounds brought up the role of entrepreneurship in order to deliver on patient experience.

Getting the best from collaborations

Speakers such as Dr Naresh Trehan, Chairman and Managing Director - Medanta Hospitals, and Meena Ganesh, CEO and MD - Portea Medical, who spoke at the panel discussion on “Are we fit for the world of new consumers?”, highlighted the importance of collaborating with entrepreneurs to fill the gaps in the patient experience eco system. As Dr Trehan says, “As healthcare service providers we are too steeped in our own work. So even though we may realize there are gaps in customer experience delivery, we don’t want to get distracted from our core job, which is healthcare delivery. We would rather leave the job of filling those gaps to an outsider who can do it well.”

Meena Ganesh shares a similar view when she says that entrepreneurs offer an outsider’s fresh perspective on the existing gaps in healthcare. They are therefore better equipped to offer disruptive technology solutions that put the customer right at the center. Her own venture, Portea Medical, was born out of a need in the hitherto unaddressed area of patient experience – quality home care.

There are enough examples of hospitals that have gained significantly by partnering with or investing in such ventures. For example, the Children’s Medical Centre in Dallas actively invests in tech startups to offer better care to its patients. One such startup produces sensors smaller than a grain of sand, that can be embedded in pills to alert caregivers if a medication has been taken or not. Another app delivers care givers at customers’ door step for check-ups. Providence St Joseph’s Health, that has medical centres across the U.S., has invested in a range of startups that address different patient needs – from patient feedback and wearable monitoring devices to remote video interpretation and surgical blood loss monitoring. UNC Hospital in North Carolina uses a change management platform developed by a startup in order to improve patient experience at its Emergency and Dermatology departments. The platform essentially comes with a friendly and non-intrusive way to gather patient feedback.

When intrapreneurship can lead to patient centric innovation

Hospitals can also encourage a culture of intrapreneurship within the organization. According to Meena Ganesh, this would mean building a ‘listening organization’ because as she says, listening and being open to new ideas leads to innovation. Santosh Desai, MD& CEO - Future Brands Ltd, who was also part of the panel discussion, feels that most innovations are a result of looking at “large cultural shifts, outside the frame of narrow business”. So hospitals will need to encourage enterprising professionals in the organization to observe behavior trends as part of the ideation process. Also, as Dr Ram Narain, Executive Director, Kokilaben Dhirubhai Ambani Hospital, points out, they will need to tell the employees who have the potential to drive innovative initiatives, “Do not fail, but if you fail, we still back you.” Innovative companies such as Google actively follow this practice, allowing employees to pick projects they are passionate about and work on them to deliver fresh solutions.

Realizing the need to encourage new ideas among employees to enhance patient experience, many healthcare enterprises are instituting innovative strategies. Henry Ford System, for example, began a system of rewarding great employee ideas. One internal contest was around clinical applications for wearable technology. The incentive was particularly attractive – a cash prize of $ 10,000 to the winners. Not surprisingly, the employees came up with some very innovative ideas that included: a system to record mobility of acute care patients through wearable trackers, health reminder system for elderly patients and mobile game interface with activity trackers to encourage children towards exercising. The employees admitted later that the exercise was so interesting that they would have participated in it even without a cash prize incentive.

Another example is Penn Medicine in Philadelphia which launched an ‘innovation tournament’ across the organization as part of its efforts to improve patient care. Participants worked with professors from Wharton Business School to prepare for the ideas challenge. More than 1,750 ideas were submitted by 1,400 participants, out of which 10 were selected. The focus was on getting ideas around the front end and some of the submitted ideas included:

  • Check-out management: Exclusive waiting rooms with TV, Internet and other facilities for patients waiting to be discharged so as to reduce space congestion and make their waiting time more comfortable.
  • Space for emotional privacy: An exclusive and friendly space for individuals and families to mourn the loss of dear ones in private.
  • Online patient organizer: A web based app that helps first time patients prepare better for their appointment by providing check lists for documents, medicines, etc to be carried and giving information regarding the hospital navigation, the consulting doctor etc.
  • Help for non-English speakers: Iconography cards to help non-English speaking patients express themselves and seek help in case of emergencies or other situations.

As Arlen Meyers, MD, President and CEO of the Society of Physician Entrepreneurs, says in a report, although many good ideas come from the front line, physicians must also be encouraged to think innovatively about patient experience. An academic study also builds a strong case to encourage intrapreneurship among nurses. Given they comprise a large part of the front-line staff for healthcare delivery, nurses should also be given the freedom to create and design innovative systems for improving patient experience.

According to a Harvard Business Review article quoted in a university study, employees who have the potential to be intrapreneurs, show some marked characteristics. These include a sense of ownership, perseverance, emotional intelligence and the ability to look at the big picture along with the desire, and ideas, to improve it. But trust and support of the management is essential to bringing out and taking the ideas forward.

Creating an environment conducive to innovation is the first step to bringing about innovation-driven outcomes. These were just some of the insights on healthcare management gleaned from the Hospital Leadership Summit hosted by Abbott. In over 150 countries, Abbott, which is among the top 100 global innovator companies, is working with hospitals and healthcare professionals to improve the quality of health services.

To read more content on best practices for hospital leaders, visit Abbott’s Bringing Health to Life portal here.

This article was produced on behalf of Abbott by the marketing team and not by the editorial staff.